Categories
health PCOS

Supplements and Supports

So I’ve nearly bled to death. I’ve gotten on (and then off) the birth control pill. My period is gone and my gut is wrecked. What does past-Madison do next?

In this final installment of my PCOS series I am going to try and do two things:

  1. Walk you through what I’ve tried
  2. Repeat, over and over again, that I am not a doctor

Because two things can be true:

I almost exclusively came to the understanding of my potential health diagnoses through independent research, online resources, and trial and error.

And it is important to seek the insight of medical professionals anytime it is accessible for you to do so.

In the now-three years immediately following the complete collapse of my sense of health, I did not have access to my primary care physician, and my health insurance plan required her referral to see any specialists. It wasn’t until I finally saw a young, female doctor through the student health services at my graduate school that a medical professional confirmed for me, in-person, that I probably have PCOS and can get a period with proper non-birth-control mediation. But when we left off, I was sure that I had Post-Birth Control Syndrome (PBCS) and my period hadn’t come back. How did I get from that to a different but similar acronym?

In my prior post I talked about Dr. Jolene Brighten, whose website and resources popped up as I manically Googled “I just got off birth control and my body is destroyed.” After reading a bunch of her articles and participating in her free online conference on hormonal health, I paid for access to her “Birth Control Hormone Reset” course (it was $150 at the time.)

In this course, I was taught the ins and outs of my hormones and their cycling, and I was instructed to try a number of things. Some of them worked. Some of them might have worked. Some of them definitely did NOT work. That’s how I’ll organize them:

PBCS things that DEFINITELY worked:

  • Eating a whole food (or “paleo”) diet : For the first year I was off birth control and in Chicago, I ate as un-processed and un-packaged as I could. In part due to my neighborhood becoming a food desert one month into my residence, I began using Imperfect Produce* and designing my meals around veggies and fruits. I did not do this exclusively: I still ate pasta, rice, canned veggies, and fast food. I still ate at restaurants and had a cup of noodles when the school day ran me to the ground. I made cookies and brownies, and finally got in the habit of eating breakfast via Cheerios and instant oatmeal. Most important was that I tried AND that I did not count calories or restrict myself in any capacity. I just ordered fruit and veggies and knew I had to use them before they went bad. It’s still the most consistent cooking I’ve ever done in my life, and it drastically changed how I felt in my body, for the better. I will also say it loud-ish and proud-ish: I don’t eat this way anymore. I have far less time to cook, and I found in the middle of my shift from PBCS to PCOS diagnosis, I began to feel very self-conscious about my weight. I actively dieted for two months, watching my caloric and nutritional intake, and to nobody’s surprise felt so much worse about myself. So I stopped. And I’ve been letting myself eat whatever sounds good since, because COVID. The last thing your body needs during an excruciatingly stressful time is to count calories. Sure, I’ve swung the opposite direction now, back to not getting enough fruits and veggies. But I’m getting back on the horse! (* This link is my referral link. If you use it to sign up, you get $80 in the form of $20 off 4 consecutive boxes. And I get $30 off my next box. Just call me a veggie influencer I guess.)
  • Cutting back on dairy: I grew up in a house where we had at least one if not more glasses of 1-2% dairy milk with dinner every night, so I’m LOVING the “got milk?” memes about the hold the dairy industry had on our generation. The rise in alternative milks has been life-saving for someone with a sensitive stomach, constipation, hormone issues, and terrible acne. Cutting back on dairy is the #1 thing that has revolutionized my skin and made my stomach far less nauseous and irritated. For those who are curious about the most eco-and-hormone-friendly alternative milk options? Oat milk and flax milk. Oat milk is now so widely accessible it’s surpassed almond milk in popularity. Flax milk’s taste is hit or miss, so I go with oat 100% of the time.
  • Eating MORE: People with hormonal imbalances often gain weight uncontrollably. With the hold diet culture has on us, it should come as no surprise that many women under-eat in response. Under-eating increases insulin sensitivity, increase stress hormones, and increase fat production as your body produces and stores what it needs to survive. Eat when you are hungry.
  • Pelvic floor exercises (and peeing more regularly): As is the case with many women who undergo any type of hormone supplementation, my pelvic muscles and bladder control dramatically decreased during my time on the birth control pill. Once, I had to walk home four blocks from a bar where I’d had 2 beers. In the 10 minutes between the bar and my apartment, without even a full bladder, I couldn’t hold my urine. In the hallway out front my door, I completely wet myself (and then had to explain it through embarrassed tears to my roommate.) I share this because it’s not talked about, even though it still brings up feelings of shame. Incontinence happens, and is tied up in our hormones. There is not much you can do about it beyond pelvic muscle exercises, and going to the bathroom as frequently as you need to avoid urgency.
  • Getting more sleep: This was hard in a cockroach-infested apartment in a city. But I tried to set aside 8-10 hours every night for sleep. I needed it. And I stuck to it. (Except for on paper-writing or exam nights…) Your body needs to rest to heal. Period. I know it’s not realistic for everyone, especially for mothers with small children, but I can’t stress enough how constantly fatigued I was after my digestive illness. I couldn’t heal without sleep.
  • Drinking more water: Grad school and illness finally did it to me. I FINALLY got — and actually USED — a water bottle. It’s amazing how quickly you can go from feeling like you’re dying to remembering that life is worth living by drinking a glass of water.

PBCS things that MAYBE worked? (Maybe it’s the placebo effect?)

  • Collagen Powder: I began taking Vital Proteins, mixing it into baked goods and beverages, because I won a giant container in an Instagram giveaway. That’s the truth. But as I looked into it, I found some feedback that suggested not only that it was good for skin, nails, and hair, but that collagen is crucial to a healthy stomach and colon lining. I will say, I experienced far fewer pinching and burning feelings that had previously accompanied my mild ulcerative colitis. But who knows: It could also be attributed to the other things I did. Collagen powder is still a great way to incorporate protein into your diet, regardless.
  • Drinking tea: I began drinking a cup of tea every morning and every evening. A number of herbal teas had been recommended to me during my illnesses (ginger, green, peppermint, hibiscus, raspberry leaf, and dandelion root being the key players.) With my sensitive stomach lining, I began avoiding peppermint because it’s an irritant. The others I alternated. The most helpful for me seemed to be ginger (I bought THIS probiotic kind from Celestial Seasonings) and green. Word to the wise: Green tea makes me bloated and burp-y. Not sure why. But I did find my stomach soothed and repaired after making tea a habit. Maybe it’s nothing more than drinking more water, but it can’t hurt!
  • Supplements: I’ve tried so many, with mixed and unclear results. If my general trajectory indicates their success, I’d say give them a try. But I cannot trace any particular result to any particular supplement.
    • Dr. Brighten’s Balance: This is the supplement I’ve taken most consistently. I didn’t notice any significant changes until I started my prescription to induce a period (we’ll discuss momentarily.) I find my PMS, headache, muscle ache, and cramping symptoms associated with my cycle are far less brutal taking this supplement.
    • Dr. Brighten’s Adrenal Support: I took this for about a year, to combat constant feelings of tired-upon-waking. It seems to have helped.
    • Dr. Brighten’s Adrenal Calm: I take it like melatonin in the evenings if I’m wired, traveling, or haven’t been sleeping well.
    • Whole food multivitamin: Certainly helped me fill some gaps in my diet, but I found them very difficult to digest. If I didn’t eat a large meal with each pill, I would experience severe stomach pain and bloating.
    • N-Acetyl Cysteine: Amino acid that is supposed to aid in production and absorption of glutathione, a key player in the balancing of hormones. Who knows if it’s doing anything.
    • Vitex: Also known as chaste tree, vitex is meant to help cycle progesterone. Since it’s found in Dr. Brighten’s Balance blend, I don’t take it unless I run out of Balance.
    • Spore-form probiotic: This is the kind of probiotic Dr. Brighten and others recommend, especially for those with leaky gut or other digestive issues. Probiotics in spore form have a better chance of surviving the journey to the center of the gut. I didn’t notice any difference in success compared to a regular probiotic.
  • Castor Oil Packs: A number of online hormone healers recommend taking up the practice of castor oil packs for liver and gallbladder soothing as well as pelvic detoxification. You soak a flannel or cotton rag in castor oil, place it directly on your skin, and then put a hot water bottle on top of that. I think any and all positive benefits I experienced could just be attributed to the benefits of a soothing hot water bottle. Who knows if the castor oil is anything more than a woo woo fluke. But I tried it! And it seemed to help in the midst of gallbladder spams and abdominal cramps.
  • Yoga (and otherwise not working out): I have always loved yoga. I pop into the classes my mom takes every time I go home. I made good use of the free yoga classes for students during grad school. I sometimes did self-directed yoga at home or in the park. I feel strong and soft and peaceful when I do yoga. I can only imagine this helped. Otherwise, working out really stresses me. I don’t find it fun. Doing high intensity workouts increase stress hormones and the soreness and inflammation of the muscles can be difficult for me to navigate on top of digestive and reproductive pain. So besides yoga, I didn’t do any other physical activity.
  • Kombucha (and other fermented things!): Dr. Brighten suggested fermented foods to aid in digestion and repopulate your stomach microbiome, which is often depleted from consistent birth control usage. I had never tried kombucha before trying her protocol, but I fell in love with it. Unfortunately, they stopped making my favorite kind and I’ve since given up the habit (@ Health Ade: Bring back your Original flavor. Please and thank you.) But I still snack on pickled ginger that I request in bulk from my local sushi place.

PBCS things that did NOT work:

  • Cutting out coffee: Lots of people online, especially those with anxiety, suggest cutting out coffee to reduce the production of cortisol, our stress hormone. I’ll admit it: Coffee can make me feel jittery and anxious. Especially if I have it on an empty stomach. But I cut out coffee entirely for three months during this protocol and did not experience a single bit of a decrease to my anxiety. I didn’t experience a natural boost in energy after the withdrawal symptoms subsided. I didn’t experience any increase in mood. When I brought coffee back, I didn’t experience any symptoms either. It seems coffee doesn’t do all that much to me, so long as I eat. And I enjoy the taste so much, I’m keeping it around!
  • Prebiotics: With the gut dysbiosis that comes from being on birth control, everyone and their mother suggests a probiotic. That, I can do. But so may probiotics now come with PREbiotics, which are meant to feed the probiotics to keep them alive and well in the journey to the center of the gut. Every prebiotic I’ve ever taken has made me so bloated and uncomfortable, it just isn’t worth it. I’ll stick to my pickled ginger, thanks.
  • Seed Cycling: The woo woo spouse to castor oil packs is seed cycling. During the first half of your cycle, you crush and eat two specific kinds of seeds. During the back half of your cycle, you crush and eat another two types of seeds. The nutrients in these seeds are meant to mimic the release and rise of the various female hormones. I tried it for three months and felt so silly, and felt so little of a difference other than increased stress having to figure out how to incorporate sesame seeds into my every day for two weeks straight, it just didn’t seem worth it. Maybe it works, but it’s too much prep for me.
  • Dr. Brighten’s food protocol: It’s important to consider the ways that, had I not been in dialogue with gastrointestinal medical professionals the year prior, I might not have recognized the risks of following her protocol to a T. Her dietary protocol is devoid of processed carbs and dairy and heavy on fat and cruciferous vegetables. This is, in part, because these foods are high in nutrients your body is naturally depleted from due to the birth control pill. However, these are exactly the same foods that populate my “gallbladder no-go list”: They are extremely difficult to digest. Ultimately, I couldn’t follow her meal plan without posing myself some serious risks. I also found that participating in her online Facebook group form was not helpful for me: None of the women could relate to these health risks posed by the diet. And when I proffered my difficulties, the moderators had little more to say than, “just stick with it!”

I’ve written for The Young Catholic Woman an article on online influencer courses and the dangers of investing time and money into someone who doesn’t personally know you. I can confirm that Dr. Brighten’s protocols were an absolutely pivotal catapult into the world of menstrual and hormonal health. Absolutely irreplaceable. But my feelings might have been different if I didn’t have the insight of other medical professionals also in my back pocket. All this to say: Please be careful. “Doing your own research” doesn’t mean “stop looking after the first aesthetically pleasing doctor with an online presence.” It means looking into numerous opinions. And remember that these thoughts in these lists are my own, personal experience. I AM NOT A DOCTOR.

One of the people Dr. Brighten herself directs her clients to for additional insight is Dr. Lara Briden, author of the Period Repair Manual. I read this book cover to cover and began to compare what I was reading there with what I had read from Dr. Brighten. It became clear to me that, what with my period not coming back after a year of following Dr. Brighten’s protocols, something else might be awry. One year is definitely enough time to cleanse your body of artificial hormones and restore depleted nutrients. It began to seem like my hormones were cycling, but I wasn’t ovulating. This led me to begin researching PCOS. The symptoms Dr. Briden included in her book’s examination into Poly-Cystic Ovarian Syndrome (PCOS) were compelling. Many of the symptoms of PCOS and PBCS are similar, but there are a couple of key differences. The biggest two? Insulin resistance and uncontrollable weight gain.

Since coming off of the birth control pill, I had not experienced any weight loss, despite having gained it so suddenly and immediately upon starting the pill. I was eating healthy and getting good sleep. But the weight kept piling on. Additionally, I was noticing that my sensitivity to sugar (which I briefly discussed in the Birth Control installment) was getting worse. My stomach was immediately upset after eating sugar. I would get fatigued and bloated, with brain fog to boot. I was also showing symptoms of male-pattern hair growth. So, at the same time that I was exploring Dr. Briden’s PCOS information, I began to see a doctor through school.

This was the doctor that finally ordered my first ever blood work for a comprehensive hormone panel. The results came back “normal” across the board, except for a slight spike in testosterone. Heightened testosterone can be a sign of PCOS. This is how we’ve landed on this “probably” diagnosis.

In response to this “probably,” and having a year and some change between actively trying to treat PBCS and feeling better, I began incorporating some new things unique to PCOS treatment:

PCOS things that DEFINITELY worked:

  • 10-Day Progesterone prescription: THIS is how I’ve gotten my period back. And while it’s not a “natural” period, it is my body naturally cycling in response to an appropriate, bioidentical hormone increase. I can ovulate while on this prescription (though it’s unclear if I am), and my periods are a normal length, consistency, and amount. I start taking each 10-day cycle on day 21 of my cycle so by day 31 I start bleeding. Periods occur in response to heightened progesterone after the collapse of a follicle. This medication mirrors that process.
  • Period cup: This and period underwear I began using moreso in effort to go as low-waste as possible across my lifestyle, but I HAVE to include them both because they’ve absolutely revolutionized my cycle for so many other reasons. When it comes to the period cup, it’s namely that having it in reduces my cramps, significantly. What’s more (and to get real with you) as a person with profound gastrointestinal issues, the period cup helps reduce bowel movement discomfort. Have you ever had the experience of wiping and your tampon string gets yanked? It’s truly awful. No such issue with a period cup. Period cups ARE however notoriously difficult to insert and remove. Here are my tips for discerning cup life:
    • If you’ve never liked tampons, period cups are probably not for you.
    • I do the “tulip” or “pinch down fold” pictured HERE. I have a tilted cervix and find this is the only way I can get it up in there. That link will also provide details for other methods of insertion and removal.
    • The period cup popping open inside you is an odd experience. Not painful, but sudden. You’ll know if it’s open.
    • I highly recommend buying the Dot Cup. It comes with a pouch, and they often run sales. In fact, during COVID they gave away hundreds for free. That’s how I got mine.
    • There’s not good way to remove a period cup in a public restroom with more than one stall. Your hands do get bloody.
    • Because period cups are made from antibacterial plastic, your chances of experiencing toxic shock syndrome are significantly reduced. Meaning, you can wear them for a significantly longer amount of time than a tampon before emptying it.
    • The first time I used it I wept because I thought I got it stuck inside me and Guy had to talk me down through the bathroom door. We laugh about it now. Don’t read the horror stories on the internet.
  • Period underwear: If you’ll recall from my Bleeding To Death installment, I am used to having to change a pad every hour. I was very resistant to period underwear for that very reason: You can’t change out a pad without changing your whole underwear, and then where do you put the used pair? They’re also typically very expensive. But I don’t trust just a tampon or cup without backup, I really wanted to reduce my waste, and I’d heard such amazing stories about period underwear decreasing period anxiety, particularly during sleep. I finally bit the bullet during Thinx’s major annual sale and it changed. my. life. It’s everything I hoped it would be. Comfortable. Doesn’t feel like you’re wearing a diaper. It really IS moisture wicking (so you don’t FEEL like you’re sitting in blood.) I sleep so much better on my period. But I DO have some pro tips:
    • BUY THE TARGET BRAND: Thinx recently partnered with Target to do a discounted line of period underwear. But here’s the deal: It’s the exact. same. product. In fact, the “changes” actually make the product BETTER. Thinx’s original line of period products are not cotton and they’re twice as expensive. Everyone and their mom knows that you should be in cotton underwear, especially when you’re on your period, and especially especially if you’re prone to UTIs. Cotton is moisture-wicking, antimicrobial, and breathable. Thinx’s Target line? All cotton. And half the price. I see absolutely zero reason why you should be buying the original line.
    • Buy the HIGHEST absorbency: They all feel the same, no matter how absorbing they are. There is no difference in thin-ness or comfort, and there’s no difference in price. So do yourself a favor and just buy the ultra absorbent pair because…
    • You can’t tell how much you’ve bled: The entire interior of the underwear is black. Which make sense, but also makes it extremely difficult to tell if you’re leaking. The only problems with leaks I’ve ever had have been in “Level 2” absorbency rather than ultra OR leaking around the edges of the “pad” after lying down. Still far fewer leaks than conventional pads.
    • Hand-rinse them in warm water before putting them in the laundry: Maybe I’m just paranoid, but better to be safe than sorry. This prevents blood from getting in the rest of your laundry, and extra-prevents the growth of bacteria.
  • Eating more protein: This is hard with a broken gallbladder. I can’t eat pork, I can hardly eat beef, and I avoid dairy as much as possible. But I’ve found that when protein is an intentional part of each of my meals, I feel significantly better. I have less fatigue and more energy throughout the day. I naturally eat less because I’m fuller longer. My proteins of choice are eggs, string cheese, peanut butter, Greek yogurt with added protein, chicken, beans, and tofu.
  • Fertility tracking: Even before I got OFF birth control, I began tracking my cyclical symptoms using FEMM fertility tracker. It’s the most intuitive and comprehensive app I’ve found, and it’s completely free. You have access to trained FEMM educators at any time as well, if you have questions. It has options for Creighton, Marquette, and other methods to input respective data. FEMM is also committed to providing comprehensive reproductive health education to young girls. I’ve learned so much about my body through this app, and throughout my PBCS and PCOS diagnoses, it’s been helpful to note what is and is not happening.
  • Strength training: In the last two months, I’ve begun boxing again. I do it once a week and I pace myself, but nothing makes me feel as good and strong and beautiful and healthy in my body as boxing. I am THRILLED to be back. What’s more, I’ve noticed a steady decline in fat on my body and increased muscle. It’s not about weight (I weigh the same, actually.) It’s about the strength of my body and recognizing it as “me” when I look in the mirror.
  • Massage: I am a very, very lucky person. My fiancé is not averse to giving me foot massages. I’ve found that physical touch has been a grounding, key aspect of my healing (to which the pandemic has posed a distinct challenge.) Being held in a variety of ways has brought me back into my body when it has not otherwise felt like mine. Whether caring touch comes from a loved one or a trained professional, regular massage has been a gift from God.

PCOS things that MAYBE worked? (Maybe it’s still the placebo effect?)

  • Ovasitol: This is the #1 recommended supplement for PCOS. Inositols have shown in a variety of studies to work similarly to Metformin with fewer side effects, helping improve egg quality and combat insulin resistance. I used it once daily for a year. I certainly noticed less of a sensitivity to sugar, but my period never came back naturally, so it’s uncertain how much credit I can give it.
  • Seeing a chiropractor: Well into working from home from my desk, I began to experience debilitating pain in my mid-back and hips. I went to a chiropractor–paying out of pocket, because I still didn’t have access to a primary care doctor–and found that while it helped treat my immediate joint and muscle pain and answered to some long-running challenges in my shoulders and hips, it also exacerbated shoulder tension and mental stress if I wasn’t going regularly (which I could not afford to do.) I am now going once a month and that feels helpful, but I’m uncertain if I can call it a net-win outside of acute treatment.
  • CBD: Lots of people who know I have anxiety have shared their miraculous stories of taking CBD and recommended it to me. It seems to be a wonder supplement: Decreased anxiety, decreased inflammation, decreased pain, increased focus, better sleep. I’ve been using Equilibria for about 4 months and despite loving their brand, their customer service, and their commitment to quality, I’ve discovered that CBD only minorly works for me: It reduces anxiety, but it increases my focus so much it actually impedes my sleep, and I haven’t noticed any improvement in my pain.

PCOS things that did NOT work:

  • Going gluten-free: Lots of PCOS gurus online suggest cutting out gluten for PCOS. Here’s the truth: Only people with sensitivity to gluten will see any sort of result from cutting it out. I do not have any sort of gluten sensitivity. Cutting it out, even for just a week, made me irritable and stressed. Like cutting out coffee, maybe it will work for you? It did not work for me.
  • Going back on birth control: It’s the #1 thing doctors tell people with PCOS to do, and its the #1 thing I will NOT do. Birth control got me into this mess, and it doesn’t actually do anything to treat what’s causing it. It just stops a person from ovulating, decreasing the likelihood that cysts will grow from post-ovulation follicles. Using birth control can do a lot of things (manage pain is one of them!) But it cannot balance your hormones.

The only thing left to do to turn this “probably” diagnosis into a “definitely” would be to examine my ovaries for cysts via pelvic ultrasound. If you’ll recall, I had one of those done before after I nearly bled to death, but it came back “inconclusive.” I haven’t had one since and, unfortunately, still haven’t had one. Ultrasounds are not a procedure covered by student health services. Until I have my own health insurance, off of my parents’ plan and onto one accepted in Illinois wherein I can also get a new primary care physician, I can’t access that exam unless I go to the ER.

So it’s here that I want to talk briefly about healthcare access and inequality.

I am a white, upper middle class white lady living in a neighborhood that houses one of the best medical facilities in the state of Illinois. But because of the drama and inaccessibility of the US healthcare system, I can’t access it for routine or acute care. My only option is Emergency Services and Urgent Care. I have incredible health care coverage through my parents’ military health insurance that I am fortunate, through the Affordable Care Act, to still qualify for until I turn 26 this September. But because this healthcare plan is an HMO, I cannot use this incredible health coverage unless I see and am then referred out by my family’s primary care physician….in California. I lose this healthcare in September on my birthday. My only hope is to receive healthcare through my employer (or Guy’s once we’re married…. a whole year later.) Guy’s job does not have corporate health coverage. He had to go through the marketplace, and then have a portion of it paid for indirectly by his boss. While still an immensely privileged opportunity, to still HAVE the marketplace option, the coverage options on the marketplace are…not great. All because the United States makes healthcare a reward for labor, rather than a right.

Now imagine all of that drama, for a person whose parents don’t have good coverage or coverage at all. For a person working a job that doesn’t offer any sort of healthcare. For a person who is unemployed.

Now imagine that this person is chronically ill or disabled, with dire, routine medical needs. With prescriptions they need to survive, at absolutely unjustifiable prices.

Now imagine that person is a person of color, or a member of the LGBTQ+ community (or both.) The very few opportunities for care FINALLY available to them very well might be tinged with disrespect. The care they receive might not be care at all. It might be imbued with racism and personal prejudice. It might be actively violent towards them. It might put them MORE at risk.

Imagine that person has kids.

And then remember: We are penalized by our government for NOT having medical care come tax season!

This. System. Is. Nuts.

It makes health a reward for working, and the more work you do the more of your body you are allowed to possess. What’s more, it disproportionately rewards those positions occupied by persons who came to the job with the help of inordinate privilege.

Health should not be a reward for work. You should not have to work to deserve health. To think this is the case is deeply ableist. It views people as only worthy to the extent of what they can do and produce.

This is, additionally, why it is so important to divest from religious models that encourage “praying pain away” and the like.

I write more about it for The Young Catholic Woman HERE. But I’ll briefly say more now: I prayed for healing, for years. I prayed that God would take my excruciating H. Pylori pain away. I prayed God would stop my bleeding. I prayed God would stop me from gaining more birth control weight. I prayed God would bring my period back. I prayed for my anxiety to go away. I prayed to be able to eat beef. I prayed for an end to hormonal acne. I’ve prayed for it all.

God did not enact any physical healing miracles in my life.

For a good long while, I was pissed. I thought God was entirely absent. I thought I “deserved” this pain for making choices I thought were in my best interest and maybe weren’t? I thought God wasn’t real. If He were, He would hear my prayers and answer me.

So many Christians feel this way. And it is wholly, completely untrue.

In fact, it’s ableist of us to think it IS true.

What’s more: God does not will suffering. God is not punishing you by making you sick. Disability and chronic illness and mental illness or not symptoms of sin. (He tells us so, right in the Gospel of John, Chapter 9.) They are natural functions of the body that everyone experiences, at some point in their life.

Again: We cannot and should not have to earn our health, just as we cannot earn our holiness. We think we can, especially as we’re inundated with stories about sainthood. We think these people earned their sainthood through their lives of service and prayer. This is not the proper way to conceive of sainthood. The saints were people who received grace-filled gifts, and then did something with them. They didn’t do something and then earn grace-filled gifts.

Catholics are especially guilty of this mindset, with our emphasis on practices, rote prayers, and sacramental milestones. We think that if we check all the boxes, God MUST respond in x, y, z ways. (I talk about this in the context of dating and marriage in THIS article.)

We can also approach the earning of health from a totally secular path that leads us to the same place. We are equally inundated with influencer advertisement for practices, supplements, workout regimens, etc. To a certain extent, this post is guilty of doing just that! We can believe that if we do all of these things, we DESERVE good health as the result and we WILL achieve it.

This is also not true. I tried every single one of those things listed under PBCS resources. Not ONE of them led me to getting my period back “naturally.” Sure, they made me feel better. They attended to other concerns I had. Not one led me to the ultimate outcome I was praying for.

Even if we do ALL the things, we might NEVER be healed. Neither by our own hand or by Gods. Healing is not earned. Physical health is not a right. It is an immense, immense privilege.

This doesn’t mean stop praying. It also doesn’t mean stop seeking medical attention. To quote my man Hans Urs von Balthasar: It means we “reasonably hope” for healing.

We can pray for our healing to end, offering it up as a form of prayer in and of itself, and reasonably hope that healing comes, with the full knowledge that if it doesn’t, it is not a reflection of our goodness. We can reasonably hope the supplements work, with the full knowledge that if they don’t, we are not to blame. We can hope from a place of true humility in one hand. And we can rage about how much this f*cking HURTS in the other. Both are very good. God holds space for both.

As of today, June 25th, 2021, I have had one major update: During this last cycle, I spotted on my 15th day. Ovulation typically takes place half-way through one’s cycle, around day 15. While this is not a surefire way of indicated that I’ve ovulated, given that this used to occur long before my birth control experience, I’m taking it as a good sign. However, this doesn’t rule out the likelihood that I have ovarian cysts. If I am in fact ovulating again, bleeding while I do very well might indicate some sort of obstruction or growth that is impacting the process. There is a real part of me that actively fears ovarian cancer. What I need is a pelvic ultrasound.

I’m hoping and praying that August 1st comes quickly, so I can shift onto workplace medical care and see a specialist as soon as possible. Until then, I’m going to keep doing what works, keep filtering out what doesn’t, and keep sharing in some form or another this series of unfortunate menstrual events. It’s only by sharing our experiences that they can become normalized. I’m grateful you’ve taken the time to listen to mine.

With love — Madison

Enter your email to get new posts delivered right to your inbox!

Our Planetary Body: Series Introduction

It’s Earth Day.

You probably know this already from the 37 emails you got advertising Earth Day sales.

In recent years, the attractiveness of an eco-friendly, “all-natural,” low-waste lifestyle has skyrocketed. By contrast, the states of our waterways, forests, soil, weather, ocean levels, atmosphere, biodiversity, and more are still rapidly worsening.

Perhaps less commonly-known is that this worsening is not a result of individual failings. The biggest contributors to environmental degradation are corporations and governments. Through the burning of fossil fuels, air travel, factory production, deforestation, destruction of land and waterways, and more, the biggest culprits are the exact people who want us to think it’s all our individual faults. We used too much aerosol hairspray, we didn’t recycle enough.

The “all-natural,” “go green,” and “reduce, reuse, recycle” movements we were raised with were developed in part to place the onus of responsibility on the individual. This is not entirely inappropriate–we do each have an individual responsibility to protect our common home–but nevertheless we were taught these things in part to distract from the real culprits: commercial enterprise.

What do macro-responsibilities and micro-responsibilities have in common? Gluttony. Consumption. Stuff.

Whether the stuff is clothing, plastic, packaging, dairy, crude oil, hunting, fishing, driving and traveling… we have too much stuff.

This is where we see the rise in popularity of “minimalism.” Sparsely decorated walls, capsule wardrobes, plant-based diets, wooden toys… We have made “having less” extremely attractive. The number of white, Christian influencers peddling celery juice in repurposed mason jars while wearing yesterday’s thrifted all-white ensemble they dried using woolen balls is too many to count. And yet it’s true! If we all had less stuff, the planet would be healthier.

The issue is this: The problem does not go away simply by yelling at people to have less stuff. Why? Because having less stuff requires having access to higher quality stuff that will last longer as well as package-free options that reduce waste. All of these things cost $$$$. All-natural alternatives often cost significantly more than the cheap, plastic, packaged, single-use, or fast-fashion alternatives.

This is not actually bad, because it often means companies are paying their workers a living wage in order to produce their items (Now, this is certainly not always the case. Many brands will hike up their prices simply because they know people will pay for the prestige of a minimalist life, still underpaying and overworking their employees.) But the difference in cost of living as eco-friendly of a life as possible is enormous, and ignores the very real problems that make environmental protection a clear issue of justice: Food deserts in rural and under-resourced communities, the racially-motivated locations of hazardous and pollutant factories, lack of nutritional education, monopolies on consumerism by big-box stores like Amazon and Walmart, just to name a few.

And even then, even if you have the money to invest in a minimalist lifestyle, 9 times out of 10 this requires a transition from a maximalist lifestyle through downsizing. Where does all the stuff you already have go if it doesn’t match your minimalist aesthetic? Well, if we’re not careful, to the landfill. See, by glamorizing eco-friendly minimalism, every brand on Earth is jumping onto the bandwagon and coming out with products labeled “green,” “clean,” “organic,” “natural,” “vegan,” etc. Their ads look just like that influencer’s home. If it’s a big company, their options are probably significantly cheaper than the small business they’re competing with. And yet it still all hinges on the temptation to have more stuff. This is “green-washing.”

It’s Earth Day.

Praise God for ecological leadership we’ve seen take precedence in recent years. Pope Francis’ landmark encyclical Laudato Si brought our ecological crisis to the front of Christians’ minds everywhere.

We have an ecological body. We have a planetary body. When we talk about Theology for Every Body, we must include this body, the body we are polluting and abusing. The first body entrusted to Adam’s care, before even that of Eve or their children (Genesis 2).

Maybe it feels a bit uncomfortable to call it a body. But isn’t it? With its veins, its air, its limbs, its water? Its pockets and cracks and bony plates?

From the moment I began Theology for EveryBody, I knew ecological justice would be a key component of its ethos. It must be. The Body of Christ necessarily includes the Earth, because it is from whence we all come and where we all end up. It is what we are made stewards of, a key component of so many miracles.

So, welcome to this series! It’s going to be an exceptionally fun and unique one, because not only am I going to write on ecological justice and theology (handing the metaphorical mic over to BIPOC leaders in these fields whenever I can) but I’m going to have Guy weigh in as well. That’s right folks: STEMforEveryBody crossover series!

Guy is a theoretical space physicist. His research centers on the interaction between the sun’s plasma particles and the Earth’s magnetosphere (did you even know the Earth had such a thing? A magnetic atmosphere? I sure didn’t!) This might not seem to have much to do with our climate crisis, but it does.

Guy is also currently back in night school studying public policy, as he prepares for a job transition into the world of science policy and advocacy. Issues of climate justice are nuanced, and are the responsibility of our federal, state, and local governments to navigate on the behalf of their constituents whose present and future livelihoods are immediately at stake. We’re long past imagining what the world will look like for our children’s children. Things are dire: The next 40 years will be make or break.

What’s more, Guy is passionate about learning about, advocating for, and supporting Indigenous education, leadership, land-management, and history. He has a fair bit of knowledge about and referrals to make to various Indigenous practices, leaders, scholars, traditions, and more. The conversation on ecological preservation and protection cannot occur without deferring to the ancestral knowledge of the people who cared for the land before we forced them off of it. The Church is explicitly culpable.

Guy and I have both committed to living as ecologically conscious of a lifestyle as we can. We’ve made numerous “swaps,” as well as larger dietary and lifestyle choices, that we look forward to sharing with you. Perhaps unsurprisingly: Minimalism is NOT a part of this lifestyle, and I’ll end up arguing that rejecting aesthetic minimalism might be one of the best things you can do.

I’ll also be sure and talk about ecological theologies. How can we see the Earth as God’s body? Is there such a thing as ecological sin? I’m particularly excited to explore “Franciscan Theology with my Non-Catholic Fiance.” Guy more than anyone else has introduced me to the Spirit of the outdoors, the holiness of flora and fauna, the necessity of breathing deep in fresh air, and respecting natural spaces through our own reverent activity.

If you only do one thing today to mark Earth Day: Read THIS book. Get it from your library, order it from your favorite small or used book store. Ashlee Piper’s knowledge is comprehensive, funny, easy to understand, and just might change your life. I’ve met her IRL and consider her one of my wisest and funnest Internet friends (DM me and I’ll show you our fun bathroom mirror selfies!)

Climate Change is not a myth. It isn’t disproven by dangerous, uncharacteristic temperature lows. It isn’t disproven by the saving of a few endangered or thought-to-be-extinct species or fewer plastic straws in the ocean. The only opinion we should have on Climate Change is that it is imminent. The only difference of opinion we should have on Climate Change is how we personally commit to fighting it.

I would say “we can’t wait to walk the path to a safer planet with you,” but it’s too late to walk.

We must run. As fast as we possibly can.

With urgent love — Madison and Guy

Enter your email to get new posts delivered right to your inbox!

Categories
health PCOS

Second Puberty: Thoughts on Birth Control

Last time we talked, we were chatting about periods and bleeding to death. At the end of that story, the ER’s on-call OBGYN said I needed to get on the birth control pill to stop my excessive bleeding. When you’ve almost died from blood loss, anything that makes you stop bleeding sounds like a good idea.

To be honest, the thought of taking birth control made me feel… mature. I was a junior in college who was not sexually active and wasn’t interested in being sexually active. Waiting to have sex until I was with my spouse was something I personally valued. But I had so many friends who were on birth control, whether it was for acne or cramps or otherwise. Like my cheerleading teammates whose neon green tampons I yearned to borrow in high school, I felt like I was joining the ranks of young adult womanhood by having a tiny pill to take every day.

I am sure there is something to be said here for how modern-day feminism has sold women’s physical (particularly sexual) independence. Pill packs come in all sorts of candy colors. IUD ads populate romcom commercial breaks. It is glamorous to have a habit that suggests sexual maturity. Much work has been done breaking down the harm this push for birth control does to women. Of biggest concern to me is the way this glamour masks a lack of informed consent and comprehensive sexual education.

The Church situates itself staunchly against this idea of a woman’s maturity or freedom meaning dependence upon sterilization, abortion, or contraception. However, only very recently has the reasoning for this set of beliefs really shifted towards “wanting women to understand their bodies, chart their cycles, and get to root causes in defense of human dignity for every life” and away from “these medications and practices encourage sexual immorality and irresponsibility.” This is in no small part due to the increase of lay women driving Catholic conversations online. As a result, there seems to be a greater space for topics of sexual violence and medical complications among these discussions. But between the old-school concerns about a slippery sexual slope and contemporary “wellness culture” that says you should be able to know and treat your body’s concerns 100% on your own by peeing on a test strip, charting cervical mucus daily, taking your temperature as soon as the alarm goes off, and using a unique blend of herbs and spices designed to balance your hormones, the Catholic world still doesn’t talk much about situations like mine.

Taking birth control for a valid health reason does not violate Catholic Church teaching.

Let me say that again: It doesn’t violate Church teaching to take hormonal birth control for a health reason independent from contraceptive use. Even if you’re married and having sex! If you are using hormonal birth control primarily for a valid health reason separate from contraception, then the intended consequence takes primacy over the secondary consequence of preventing pregnancy. This is what’s called the ethical principle of Double Effect. But, you have to 100% NOT intend the secondary consequence. So if there’s even a small part of you utilizing hormonal birth control for a contraceptive reason, then yes. That would violate Catholic Church teaching.

What we see is a confusion about what it means when the Church requires a marriage be “open to children.” When the Church says “openness to children,” it means that you agree to not act in such a way that intentionally prevents children and, if you were to become pregnant, you would bring that child to term. It is confusing: hormonal birth control prevents children 91% of the time. But if you do not intend to prevent children, and are taking birth control because you are literally bleeding to death, you’re in the clear.

There may be a bit of debate around weighing the proportional significance of certain outcomes. For example, if you are a married person taking birth control pills to prevent acne primarily, all the while it is acting as contraception secondarily, the Church might say that the secondary outcome is proportionally greater than the first. Proportional justification is difficult, and I’ve taken us into the weeds a bit with medical ethics. But it is important to me that YOU, reader, know that you don’t have to forgo birth control and put yourself at risk of reproductive injury (or death) to receive the Eucharist. And hey you, if you’re on birth control, Jesus wants to be with you in every part of your life, no matter the reason you’re on it (even if it IS for contraceptive reasons.)

The number of church leaders, men and women alike, who have articulated to me in one form or another that it is impossible for women to not implicitly desire contraception when on birth control is astonishing. Time and again we see the theme that women are intrinsically sexual and seductive, dating all the way back to our girl Eve. This anti-pill rhetoric is reminiscent of the mid-20th century, where ads arguing against birth control displayed a new type of woman that was dangerous, feminist, financially independent, sexually exploratory, and a threat to traditional, maternal family values (a type of rhetoric we now often see used to characterize LGBTQ+ folx…)

But these are not the only groups that suffer from discrimination within conversations of birth control. For decades, it was customary to put women with disabilities on the pill, regardless of symptoms or circumstances. This custom was both eugenic and predatory: It was designed to combat the potential for the passing on of “compromised genes,” all the while making it easier for disabled women to be sexually abused in care facilities. The justification for the procedure was often that intellectually disabled persons had heightened sexual appetites, in some cases even believed to be natural-born sexual predators. Sometimes, it was done simply to make caregivers’ cleaning jobs easier: No menstrual blood. Many disabled women were also forcibly given hysterectomies.

This violence against disabled people is sickening. For these reasons, contraception among the disabled community is a tricky subject. It is important to combat stereotypes about heightened sexual desire. However, disabled persons also suffer from paternalistic infantilization that suggests the disabled are more childlike and lack sexual appetites completely. Even well-meaning parents can minimize their children’s sexuality, often viewing pubescent and adult family members with disabilities as younger than they are. This is also dangerous and untrue. People with disabilities can experience attraction just like anyone else, and to restrict opportunities for dating, marriage, and intimacy would itself be discrimination as well.

Care must be given to acquire full, informed consent, given to the degree that it can be from the individual (secondarily, the individual’s family.) Just as we work to dismantle the virgin/slut dichotomy under which women are held to both “pure” and “sexy” standards, so too must we work to dismantle the same dichotomy as it appears to oppress disabled persons.

Disability complicates this theological discussion of birth control in important ways. The Church would say that prescribing birth control for contraceptive reasons is always wrong, and to encourage sexual intimacy outside of marriage is wrong as well. However, we must understand that the acceptance of the Church’s moral teachings falls to the responsibility each individual has to their own conscience. To force a Church teaching upon a person who does not fully comprehend it, in a way that would infringe that individual’s rights to self-determination, if that person expressly articulates the desire to act in a contrary way, and in a circumstance where that individual depends upon assistance to achieve their goals, is something we should consider a sin. It is perfectly acceptable for us to say, “It would violate my conscience to help you do that, so you might need to find someone else to help you.” But, to outright deny a person the aid they request or to implicitly work to prevent it is prejudicial.

Through conversations I had with youth ministers, pastors, and teachers while I was on the pill, it became clear that hormonal birth control is still largely viewed as a “gateway drug” to sexual behavior. “Once you have the pill, what’s stopping you from having the sex?” Well…. self-control. Lack of desire. Lack of partnership. Personal values. Religious values.

The reality is, birth control pills are medicine. Even if they shouldn’t be medicine.

There is no reason we ought to accept birth control as the height of women’s medicine. With the immense amount of risks and side effects involved, with the uneven distribution of pressure it places on women for sexual responsibility, and with the ignorance of the female body that it fosters among medical communities, I think it’s about time we kick hormonal birth control the curb and discover something else!

But for now–and back then, when I myself got on birth control– the pill is the near-universal response to hormonal disruption and reproductive concerns. I didn’t want to have sex. I just wanted to stop bleeding and cure my iron-deficiency anemia. I wanted to be able to go to a store while on my period. I wanted a pair of underwear to last longer than a month.

For all of these reasons, I never asked my doctor any follow-up questions about hormonal birth control, and he provided me no facts. Other than an aside from the pharmacist that birth control can increase risk of cancer and that I should invest in compression socks when traveling to avoid clotting, I was told nothing.

At first I was put on the “low dose” pill. But after a week of pills, which should have indicated to my body that my period was done, I was still bleeding from that original period that induced my hospital stay. My doctor indicated to me that this meant the pills were not working, so he put me on a higher dose. Looking back now, I can see what my hormones were trying to say: something was really low.

The higher dose worked immediately. I FINALLY stopped bleeding.

But you know what else happened immediately? Weight gain. Within 2 weeks of birth control pill-taking, I grew two cups sizes and none of my pants fit. I had to go shopping for all new bras, underwear, bathing suit, pants, and even some shirts.

I don’t think women quite talk about this enough, the financial strain and frustration of fluctuating weight gain. Shopping for clothes when your body looks and feels unfamiliar is extremely challenging. I felt like a stranger to my body, and I didn’t know how to dress her or make her feel like me. I still don’t. Even after all these years, I’m still dealing with weight gain, stretch marks, hair loss, and more that have left my body feeling like not-my-body. This isn’t about being upset at my body’s largeness, it’s about being upset at my body’s unfamiliarity. At first, I felt so much shame in those feelings. I felt like I was betraying my friends and family whose bodies mine now looked more like. But there is a way to articulate disappointment at weight gain that isn’t inherently judgmental or fatphobic. My body has changed. That is hard.

Besides the weight gain, only one other side effect became immediately apparent: Sensitivity to sugar. My sophomore year of college I pretty much only ate Captain Crunch. From the moment I started on birth control, my stomach was upset when I ate anything sweet. Those frosted cake cookies from Safeway? I couldn’t eat a single one without feeling nauseated. I. Was. Bummed.

In many ways, I noticed less happened than I expected. My acne persisted. My iron-deficiency improved dramatically. I even started having cramps during my periods, something I’d never experienced before. But between my new body and my new surges of hormones, my emotions were all over the place. I cried at the drop of a hat (still do.) My rage felt stronger than before (still is.) I felt like I was going through a second puberty. Women will respond to hormonal birth control differently. Many women I know started taking it specifically to quell acne and cramps, with success. This wasn’t my experience.

Things plateaued for Madison. I went through my junior and senior years of college relatively unperturbed. But I still had to buy new bras and clothes every few months as my weight steadily increased. There was one instance my senior year where, for my trip to India, I took both an oral typhoid vaccine and daily malaria pills. I’m not sure which was contraindicated, but I started bleeding at the airport and bled for 17 days. It wasn’t a high quantity of blood, but it was a long period, despite me being on the pill.

Things got more serious the year after I graduated college. My year of post-grad service was challenging for a host of reasons, so my feelings of depression at first felt circumstantial. But as months went on and I established a regular workout routine of boxing, in part to deal with my negative emotions and in part to combat the weight gain that was still ongoing, I realized that neither were improving. They were, in fact, getting worse.

I began watching fitness videos on YouTube, to supplement my serious lack of income with which to pay for regular boxing classes, which led me down a rabbit hole of videos on hormonal health and fitness. (More to come on which channels/YouTubers helped me the most!) Through these videos, it occurred to me that we never did any work to determine the root cause of my immense bleeding before I got on birth control. When a pelvic ultrasound came back inconclusive, the doctor scrapped it and said “eh, it’s probably not an issue.” When I asked to do hormonal blood work, they said “You’ve lost too much blood and your hormones are already too out of whack for us to glean anything from them.” And in the years since, every time I saw the doctor, I was told that being on birth control was the best thing I could be doing anyway, and it wouldn’t serve anyone to look into my reproductive health any further until I was ready to have children.

I know this is a refrain many women hear. This is how doctors have been trained to respond to women’s health! Hormonal birth control has been sold to doctors as the magic solution to a host of women’s hormonal ailments, and so it is sold to us. Childbirth is sold as the be-all, end-all of a woman’s vocation. It doesn’t occur to doctors that a woman might value her health in and of itself rather than as a tool for her future childbearing. What about women who don’t want children? In case I haven’t said it in a while: God cares about your body, regardless of what it can or will do or produce.

It is good for you to be healthy, and to have greater knowledge about your body, regardless of whether or not childbirth is a part of your story.

In my upcoming post on the educational tools, tips, etc. that I found helped me in my understanding both of the way birth control works and the contributing factors to root cause diseases, I will refer you to the medical professionals I myself leaned on. I am not a doctor.

I will say, through my initial research that post-grad year, I leaned that the hormones I was putting into my body were not bio-identical. Progesterone and progestin are different: The first is what your body makes, the second is a chemical that looks like it. All of this to say, the bleed you experience while on birth control is not a period. It’s a “withdrawal bleed.”

What’s more, I began to see that if hormonal imbalance was at the root of my heavy bleeding, supplementing my body’s natural cycle with artificial hormones was not going to allow my body to “right itself” and start cycling properly. I was, however, hopeful that my body might have learned something after 2 and a half years on the pill, and that my cycle might come back a bit less heavy afterwards.

(Spoiler alert: It did not come back. At all. Still hasn’t. Not really.)

The April of my post-grad year, I transitioned off of the birth control pill. I was tired of feeling like I wanted to crawl into a void every day, like no one would miss me if I were missing or dead. I had never had thoughts like those before. I was also tired of working hard on strength training only to find that I was still gaining an average of 10 pounds every 6 months.

What happened after I transitioned off the pill was the scariest place I’ve been health-wise. That will be the subject of the next installment in this series. Want a sneak peek? It has almost nothing to do with hormones or my period, and everything to do with my gut.

I am proud of the way I made the most of being on hormonal birth control. It got me thinking about the Church’s stance on birth control. It got me researching my cycle for the first time. And I used my experience as a launch point for discussions with religiously conservative friends and family with whom I tried to expand on limited views of hormonal birth control and women’s sexuality.

What’s more? I told my middle school students I was on the pill. Think that’s crazy? TMI? Breach of boundaries? Inappropriate for a Catholic school? I would’ve thought so too, but 1) they asked 2) I don’t lie and 3) it ended up being the best lesson I ever had with my students. I wouldn’t change a single thing. I’ll be writing about that soon too 🙂

In brief? Women are in control of their bodies and sexuality. Providing all women with accessible healthcare is important. Birth control is healthcare, but that doesn’t mean it’s the pinnacle of healthcare. We can do better and we should, because birth control’s side effects are extremely dangerous. Disability is a part of this conversation. And you should never be afraid to pursue genuine medical help as a Catholic woman.

Looking forward to talking more soon about tools, gut health, PCOS, and comprehensive sex education.

Hug — Madison

Enter your email to get new posts delivered right to your inbox!

Categories
health

Wheelchairs and Chandeliers

During my year of service as a Lasallian Volunteer in Oklahoma, over dinners of salad, rolls, and some sort of meat mixed with some sort of cheese, one elderly Christian Brother I lived in community with would ask about my family. He had asked many times before, but his memory was going. I told him about my parents, my military father and my stay-at-home mother. I told him about my younger brothers, about Matthew’s special needs. He listened, wide-eyed, responding with the occasional guffaw as I recounted Matthew’s tendencies, likes, and dislikes. And then he concluded his questioning with the statement he always concluded with: “He sounds like a burden. I’m amazed your parents didn’t institutionalize him. Your poor mother.”

He sounds like a burden, he sounds like a burden, he sounds like a burden. My eyes would well up. My throat would close. Sometimes I tried to explain, gently, that the world treats disabled persons differently now. Institutions are not as popular. There are more resources for family. Other times I tried to explain that his statements were uncalled for; “He’s not a burden, Brother. He’s amazing. He has the most fantastic sense of humor. He lights up my life.” Even if these strategies worked and I was able to teach this Brother something, by the next dinner that spot of short-term memory was gone, and a rehashing was inevitable. Eventually I just stopped talking at dinner.

I am still healing from those dinners. My family not being welcomed at a dinner table they weren’t even at left me feeling like the fullness of my person wasn’t welcome in community. But I think about that word often: burden. Not only because it offends me, but because the truth is, I use it all the time. About myself.

Raise your hand if you’ve ever gotten sick or injured and felt like a burden? If you’ve ever apologized for being in need of someone’s assistance? If you’ve ever felt more upset by the inconvenience of being sick than the actual symptoms of the sickness itself? If you’ve ever felt ashamed of your depression, anxiety, or grief because it makes you feel helpless and reliant upon others?

It’s hard when our culture of “being on a health journey” is supremely individualistic. We don’t think of it that way, because it’s marketed to us as being better for the planet (turning the attention outside ourselves) and better for our children (turning the attention outside ourselves.) But this wellness culture is not communal! It is built on the idea of personal habits, personal research, and personal improvement. “Self” care, rather than community care. It’s no wonder that feeling sick or being injured feel like failures! We are told at every turn that there’s a ritual for that. We simply neglected to manifest it.

Then we do ask for help and we immediately feel worse. “Because she had so many other things to do today.” “Because he had to take time off work.” “Because I had to take time off work and inconvenience my team.” “Because I missed an important test.” “Because he’s already been so stressed, and now this.”

I think back to high school sick days. At first, the thought of lying burrito’d on the couch while eating spaghetti o’s and watching endless hours of daytime television gave me a feeling of immense relief. But soon after, the relaxation wore off, and I began to panic about everything I’d missed at school that day. I also felt guilty for how much additional work my mom had to do in order to tend to me, all the while still caring for my younger brothers, one of whom needed regular one-on-one attention due to his disabilities.

Other times, taking sick days was a reprieve for my mother, who enlisted me in helping her with the day’s tasks and care needs for my siblings. Me being home meant another set of eyes and hands, even if I was injured or unwell. On these days I felt far less guilty and burdensome, but I also wasn’t actually able to rest.

I would argue we are all vacillating between one side and the other when we experience feelings of burden. We are embarrassed by our own mental, emotional, and physical impediments because they leave us less capable of doing the things that have come to be expected of us from school, work, friends, and family. We get tired of relying on other people. Our inner voices reprimand us for being so needy. We begin to panic about what resting means for our independence and success. We jump into compensating for our rest. We push ourselves to do more, more, more.

It’s our social system of constant productivity, and uneven distribution and recognition of labor, that make us feel like burdens when we are simply being human.

Your partner had a million other things to do today and now they’re caring for you. What makes tending to a loved one equally or comparably burdensome to the other things in one’s life? Is it the pressure placed on them by these other things? A parent who’s overwhelmed by child care now has one additional child to tend to who would otherwise be in school. Might it be that the onus of this burden actually falls on our lack of communal supports for parents? You miss work or school and are now irreparably behind. Might it be that our systems of education and work require so much of us, all crammed into a single day, that we feel the immense pressure not to miss even one? Your unclaimed sick days and vacation time are calling to you, reader. They’re yours for the taking!

We can turn this conversation from the negative and accusatory into the positive and imaginative in a way The Nap Ministry has been pioneering: What might rest, recovery, and health look like if we had robust systems of support in place? Less to do in a day? How would you relax if you knew you didn’t have anything else to do? What would you permit yourself to do? How would it change your relationships? Your relationship to your body?

Thinking imaginatively about how the world might look and how we might feel if we prioritized interdependent care and rest is central to working against ableism.

If you’ve read up until this point positively identifying with our cultural standards that demonize the occasional, human experience of illness and injury, I invite you to consider what this means for persons who identify as disabled and/or chronically ill. Earlier I said, “We are embarrassed by our own mental, emotional, and physical impediments because they leave us less capable of doing the things that have come to be expected of us from school, work, friends, and family.” What about the people who…always feel that way? You injure a limb and experience the inconvenience and shame of limited mobility until you heal and are back to work, double time. What about a person who will never experience normative mobility? You experience a moment of panic while out on a date and then immediately feel guilty for the way your emotions impacted your partner’s experience. What about persons who do not have the ability to emotionally regulate, ever? Should they be embarrassed? Are we embarrassed of them?

This is a tricky line to walk. For some caregivers, caring for a person with a disability or chronic illness does feel like an immense burden. Caregiving requires additional resources of money, physical assistance, emotional care, and time. Sometimes disabled persons do things that do embarrass their caregivers without intending it. These feelings might be exacerbated by crushed expectations of an able-bodied child or life-long partner.

Individuals experiencing disability may themselves identify their life experience as extremely burdensome, to them and to their loved ones. Especially a person who, for a portion of their life, experienced what we would consider normative health. Accidents and the onset of illnesses and diseases all contribute to feelings of burden.

How do we resolve this tension? Say it with me: “A situation can feel burdensome. People are not burdens.

We consider injuries and illnesses burdens to our selves and our to-dos. We consider our injured and ill selves to be burdens to others. It’s a conflation: “This illness is burdensome so I am burdensome.”

This is dangerous for people with disabilities. While you work your way out of feeling burdensome by proving to yourself and others that you can not-be-that-way by doing what is expected, people with disabilities face this slippage within their own minds like we do and from others who project this idea of burden onto them (like the Christian Brother I used to live with) because of the expectation that they cannot do what would prove otherwise.

What’s worse, when it’s status quo to work despite being unwell, but we speak with tones of amazement when we see a disabled person working despite their disability, we are betraying our preconcieved assumptions about who we thought could work. When we celebrate a disabled person getting a job because it shows they are more capable than we thought they were, we are showing exactly what we value (and it’s not humanity, it’s work.)

In returning to our imagination before: How might these feelings and experiences be ameliorated by greater resources? Greater support? Less pressure to be productive? Fewer things pulling us in fewer directions? How might a family receiving news of a child’s diagnosis feel some alleviation of their disappointment if met by robust commitments from medical professionals, family members, community partners, religious organizations, and friends to the shared responsibility of supporting the child’s wellbeing? What would our world look like if all challenges were met with these responses of togetherness?

One thing’s for sure, we would rightfully blame society for lacking sufficient resources, not the individual for lacking sufficient self-reliance. Alleviating burden means establishing and amending systems around the realities of bodily-ness, rather than contorting our bodies to fit the systems.

With this in mind, I invite us to consider why people are upset by the latest news about singer-songwriter Sia, and her new movie portraying a protagonist with autism.

For the lead role, Sia cast Maddie Ziegler, her everything-starlet, rather than an actress who actually has autism. When prodded by Twitter users and activists asking why she didn’t cast someone with the experience to portray someone with the experience, her responses can be summarized as, “It would have been burdensome for the actress to perform the requisite tasks, and it would have been burdensome for the rest of the cast and crew to adjust to the increased needs of an autistic lead actress.”

Note: the word Sia actually used was “compassionate.” Apparently, she had worked with an autistic actress before hiring Ms. Ziegler, but due to the stress this autistic woman experienced, Sia found it most “compassionate” to cast someone else. What if Sia thought she was being compassionate when really, this woman was heartbroken?

It is right for alarms to immediately blare in our minds when we see “compassionate” and “disability” in the same sentence. Especially if the compassionate action is a removal of opportunity or rights from a disabled person. Throughout history, the mistreatment, institutionalization, and even death of disabled persons has been oft-labeled the “compassionate” decision. Sometimes the words used are “merciful,” or “dignified.”

Real mercy, dignity, and compassion will never strip away the rights and humanity of any person.

The Church stresses the centrality of intrinsic human dignity to all things. This human dignity is rooted in the image and likeness of the God who created us, a God who we are told is merciful and compassionate. Any action labeled “compassionate” or “merciful” that does not pursue or protect the sustenance and fruitfulness of life, the foundation of God’s own Creation of us, is a contradiction. [CCC 1700] And remember, life can be fruitful in ways other than birth too! Your labor, your art, your service, and your prayer are also fruit that demands the fullness of this same protection.

We also need to be aware of how individual words can virtue signal. Compassion, mercy, and dignity make us think of Scripture. For me, they evoke (and invoke!) the God of Mary’s and Zechariah’s canticles:

“He has mercy on those who fear Him, in every generation. He has shown the strength of His arm. He has scattered the crowd with His conceit. He has cast down the mighty from their thrones, and has lifted up the lowly.” [Luke 1:46-55]

“He promised to show mercy to our fathers, and to remember His holy covenant…In the tender compassion of our God, the dawn from on high shall break upon us, to shine on those who dwell in darkness and the shadow of death, and to guide our feet into the way of peace.” [Luke 1:67-79]

I have memorized these canticles. During my year in Oklahoma, we prayed them at morning and evening community prayer. Every day, immediately after sitting through a meal where I defended my Matthew against accusations of burden, I sat beside the same Christian Brother in our green-carpeted home chapel, reciting these words over and over.

Community that year was overshadowed by disaster: A tornado that narrowly missed our home, the unexpected death of a dear friend to community, a life-altering illness. The months were a parade of injury, sickness, grief, and pride. The words we prayed twice daily never seemed to come to fruition.

This is how I know for certain: Just because you say a word doesn’t make it manifest. Saying “compassionate” doesn’t make you compassionate. Especially not when, in your very next breath, you tell an autistic woman sharing her experience, “maybe you’re just a bad actor,” instead of having true “compassion” and considering the bias that might be operating against her…

Now, we have no way of knowing the fullness of the Sia story. When we don’t ground statements (and movies) about disability in the lived experience of actually-disabled people, they will always be speculative and open to the influence of bias. We can operate under a lens of true compassion and assume that, with Sia’s commitment to featuring disabled, queer, and trans performers and characters as it is, her intentions were probably good. However, we are also right to operate from a lens of suspicion, and be bothered by the continuation of a narrative that working with a disabled person is burdensome. Sia is maintaining harmful expectations of labor, asking the autistic body to conform to the system of Hollywood, rather than demanding Hollywood conform to the reality of an autistic body.

“Come to me, all you who labor and are burdened, and I will give you rest. Take upon you and learn from me, for I am meek and humble of heart…” [Matthew 11:28-29]

The annotations in my New American Bible, Revised Edition expound upon this Biblical discussion of burden in its societal context: The burden to which Christ was referring was the burden of the Law. When we see “The Law” in Scripture, we should assume the referent is the Law of the Hebrews, which we know from the Old Testament was a vast and encompassing code of conduct that formed the entirety of Hebrew society. We can interpret this passage, accurately, as Christ speaking to people for whom the demands of society’s present structure and expectations are exceedingly heavy.

Christ Himself calls us to take up His mission of breaking down barriers between those burdened by society’s expectations to create a New Kingdom, one where all people, especially those outcast because of illness, are welcomed.

We start by recognizing intrinsic human dignity. We distinguish between the onset challenge and the person experiencing it. We think imaginatively about what a world might look like with greater supports. Then, we build those communities. We ask for help. We humble ourselves, remembering that humility and self-deprecation are not the same. We commit to being present to those who need assistance. We permit ourselves to be imposed upon (which is one definition of the word “meek”) and do so with gladness. This is how we lighten the load.

Enter your email to get new posts delivered right to your inbox!