Essays

Why I’ll Never Be Okay With Having A Chronic Illness

Everyone expects me to be okay with my condition. I'm here to tell you that's not how it works.

After my mom died, my doctor told me that grief was a gradual process. He also implied that there was a time limit on it. “Three months is normal,” he told me. “Six starts to seem long.” But when you’ve lost a part of yourself, there is no estimable time within which you’ll be better, no deadline in which you forget. And I’ve found the same to be true of the expectation that I’ll “come to terms” with having MS.

Multiple sclerosis is a disease of the nervous system. Faulty antibodies attack the body instead of protecting it, crossing the blood-brain barrier to cause inordinate damage to the brain and spinal cord. The condition creates lesions on the protective coating on my nerves, meaning signals get interrupted or confused, leading to nerve pain, tingling and itching, spasms, immense fatigue, mobility issues, cognitive impairments, increased disability… the list goes on, but you get it.

I was diagnosed with relapsing-remitting multiple sclerosis in 2013, around 18 months after my mom first found out she had cancer. While her initial treatment and operation were successful, ridding her body of that first tumor, it came back with a vengeance. By then, my own health issues were in full swing, too. Both diagnoses changed my life irreparably, and I’ll never be okay with that.

An Off Switch I Don’t Control

Both diagnoses changed my life irreparably, and I’ll never be okay with that.

Even though finding out I had a chronic condition explained a plethora of symptoms that went previously unexplained, learning that I was now disabled was about as digestible as the wrapper on a Big Mac. The only things that kept me going during the dirge that followed were an insatiable appetite for pop culture, and my support network on social media. Rewatching Felicity got me through, when you’d think meds would suffice.

My diagnosis floored me. There are literal physical things I can’t do anymore, and goals I’ll never achieve, because my body had developed its own turn-off switch that I’m not in control of. For instance, I can’t keep up with my friends, and traveling is way more challenging than it once was. I have to abide by a different timetable from the masses, and make sure that I exercise to stop my muscles giving up altogether. I don’t look too far towards the future because my body has the potential to deconstruct like the mission in a Tom Cruise movie, and that terrifies me. And before anyone starts, that’s not negativity—it’s my reality.

Any initial relief I had in explaining why I am the way I am—and no, it’s not in my head, and I’m not lazy, either—was soon replaced by a generalized dread that doesn’t really subside, nor should it. I’m living with a disease and it’s degenerative—how exactly should I feel about that? How much longer until I accept it with the ease of a Netflix cancellation? Answer: NEVER.

My Life Before Diagnosis

I’m living with a disease and it’s degenerative—how exactly should I feel about that?

Prior to diagnosis, I made theater shows. From applying for funding, to writing scripts, to performing the work myself, I was forging a career in the arts and trying to do it on my own terms. In some ways, performing had been my dream since high school, but I was never a natural at it—too awkward a human being to smoothly navigate a stage believably. But funding bodies and arts organizations continued to support me, so I went where my career seemed to take me.

A week after wrapping the tour of my second solo show, I ended up in the hospital with what turned out to be MS. While I’ve tried to write theater shows since, it’s a much trickier affair. My body can’t handle a nine-to-five, or fit into another person’s schedule.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better. In meetings since I’ve been told that theater takes everything and might not be for me if my heart isn’t in it. But my heart isn’t the problem—it’s my debilitating and energy zapping sickness that’s the barrier, and desire won’t suddenly make that shit possible. Plus, I can’t change elitist attitudes which make the arts an exclusive arena that’s difficult to enter for most, near impossible for the disabled.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better.

Just think about the movies and TV shows that have chosen to cast able-bodied actors in disabled roles. Arguments that “the best person for the job was hired” persist, and should prove just how far accessibility has to go before disabled people don’t feel disappeared into the background, erased from their own stories and character arcs.

After being told “we all feel tired” and generally having my symptoms minimized out of existence, and it being suggested that theater’s 24/7 work week wouldn’t suit me, I’m more determined than ever to put up a fight. I won’t go quietly into the night about this chronic illness I didn’t ask for.

A Diagnosis Is Not A Tidy Bow

Some therapists and healthcare professionals would like a diagnosis wrapped up neatly with a bow or placed in the correct trash can for recycling. A reusability. A sense of understanding or acceptance within a respectable timescale. However, learning to live with a new normal doesn’t just take time, but the effort of rebooting a beloved franchise. And as any sick person knows, effort is something in extremely short supply. My phone battery is running at 4% constantly and the wire to my charger is dangerously frayed.

Obviously, it’s not my job, nor anyone else’s, to make onlookers “feel better” about the disease that I have to live with. And the same goes for grief. If you’re uncomfortable because I’ll be mourning my mother forever, in my own way, then that’s your problem, not mine. My body has refused to conform to any supposed “norm” and my brain’s following suit.

I’m probably coming off as negative which is… well, accurate. I didn’t want this disease anymore than I wanted Ben Affleck to play Batman, but I learned to love him in his own way, even in those dead-eyed Justice League reshoots. And I’m learning to love my MS, and handle other people’s reactions to it in the same way that Affleck handles criticism to his superhero casting—by literally not giving a shit.

In case it needs stating: There is zero reason that anyone with a chronic condition should perfectly process their diagnosis, apart from to make other people feel better about it.

But just because I refuse to accept the chronic condition I’m stuck with, that doesn’t mean that I’m not living. I live in spite of my condition. Multiple sclerosis isn’t all of me, although on some days it consumes me, tries to convince me I’m dying. I might never shift the anxiety it’s amped up in me like a Christmas drink in Starbucks—too much syrup, a sickly cinnamon sprinkling, a heart-pumping, insanely sugary, caffeine explosion. And I sure as hell will never be happy I have a degenerative disease which requires monthly IV infusions. And my mom’s still dead, in case you forgot (I didn’t). I will never be okay with either thing, and not being okay is absolutely the only way for me to be.