It’s the middle of a week day, the sun is shining, and I’m scooting around my house with my favorite robe on. You’d think a thirty-nine-year-old mom who works from home would be sporting some workout clothes or trendy mom jeans and a graphic tee, but instead, I look like I just rolled out of bed.
I was helping my preschooler in the bathroom and caught a glimpse of myself in the mirror. My makeup-less face, no cute accessories, the coziest clothes possible, and my robe. I looked tired, sad, pathetic, even. Why can’t I just get it together a little bit? Maybe a quick brush of mascara and swipe lip gloss application and some matching clothes? I was spiraling into a pit of internalized ableism — which was far more unattractive than my outward appearance.
I’ve been living “sick” for over fifteen years. That’s what an autoimmune, chronic, incurable disease does. It chips away at you, hour by hour, day by day, and year by year. Yes, those of us who are chronically ill are resilient. Here’s the thing: we don’t have a choice. Our diseases are literally do or die, sink or swim. We can either manage our diseases, doing our very best to stay healthy and in balance, or we will die. There’s really not a gray area for most of us.
As if having type 1 diabetes wasn’t enough, four summers ago, I was diagnosed with breast cancer. After a mastectomy, I slowly began my healing journey. That is until this past January when a small mass in my chest wall turned out to be a breast cancer recurrence. I had two surgeries, and now I’m in the midst of chemo and soon, radiation.
I have every right, I know, to walk around in my robe. The fabric is soft and comfortable in an otherwise very uncomfortable situation. My hair is shedding. I no longer have boobs or foobs, instead rocking a flat chest with five scars. I have chemo acne, and as if that wasn’t enough, I also have chemo rashes — random rashes all over my body. I’m exhausted, and no amount of coffee can redeem me. I have dizzy spells, aches and pains in places I didn’t know existed, random bloody noses, and much more. This is the price I have to pay to battle cancer.
Part of my struggle is seeing healthy moms on social media. They’re redecorating their living rooms, running for miles, and driving their kids all over town for sports practices. They have a double-shot latte in one hand, and sunglasses perched on their highlighted hair. I feel like I should be among them, but I can’t, because I barely have the energy to walk around my house.
Internalized ableism tells me I should suck it up, I should stay positive, and that I am stronger than I think. The cheesy-religious folks tell me that God only gives the toughest battles to the strongest people. (Ahem, me.) I need to be more brave, more resilient, more “it is what it is.” Maybe I should just “get well soon,” a phrase many have said to me, as if getting well is ultimately in my control.
Even if I don’t scroll through social media, the should-be haunts me. I should-be doing what others are doing. I should be running errands, working, helping my kids with a project, exercising, vacuuming. What I shouldn’t be doing is shuffling from room to room, wearing a robe in the middle of the day.
I have to constantly work to clap back at the internalized ableism that haunts me. Chemo, I remind myself, is a big freaking deal. It’s brutal, a system in which poison kills both healthy and cancer cells, rendering me victim to a whole bunch of unpleasant side effects. Chemo is a package deal. You don’t get the benefits without the downfalls. I have every right to wrap myself in my favorite robe, no matter the time of day, using it as a tent of refuge in the midst of a major storm.
I also know that this isn’t forever, that in a few weeks, a chemo infusion will no longer be part of my weekly routine. Of course, radiation is fast approaching, but thankfully it doesn’t have the same epic side effects that chemo does. If then, I still need the comfort of my robe, no makeup, no jewelry, and quiet days at home, then so be it.
The goal is to heal, not push myself to the brink. Healing takes time, patience, and a whole lot of self pep talks. I once prized myself on how much I could accomplish in a day, how many to-dos I could check off my list. Now, depending on which day it is, it’s a major accomplishment just to take a shower or load the dishwasher.
I’m learning to conserve my energy and cherish small victories. I also know exactly what brings me comfort versus what depletes me. I’ve been direct and outspoken, especially when people ask me how I’m doing. I rarely say “fine,” because I’m rarely fine. Most of the time, I’m either doing really well (all things considered) or I’m having a day when even the smallest task, like making a phone call, can zap my energy. I have no problem telling someone else what’s up — because I’m not here to protect their feelings about my situation.
A physical or mental health battle is difficult enough, but those of us who are sick also fight internalized ableism. That ableism is relentless. We get messages of not being “enough” or “normal” all the time from society, and eventually, no matter how positive or confident we are, those messages become a sermon we preach to ourselves. We then have to fight our health battle and the ableism. It is exhausting, confusing, and difficult.
I catch myself believing the toxic ableist messages and have a choice. I can either invest in them or reject them. Sometimes it’s far less work to simply accept them, but it’s hardly helpful. My healing journey is complicated, but it’s not impossible. Internalized ableism be damned.