“A couple years ago I was diagnosed with multiple chronic illnesses, so, for now, trying different treatments is kind of my full-time job.”
This has been my standard answer to the inevitable get-to-know-you “what do you do?” question at social gatherings since I graduated university. I’ve recently amended it to try to avoid deeply personal conversations about my condition, diet, and medications with friends of friends at parties, but the truth still stands: I have spent a huge portion of my time and energy for the past year and a half trying various treatments.
I have been viewing treatment and the pursuit of symptom relief as my job. I have put in countless hours, I have been diligent and dutiful, I have invested sweat, tears, and money, but if “getting better” was my actual job description, I’d have been fired ages ago. The level of exhaustion that comes with working this hard on something so wholly out of my control is something I never anticipated. It’s one of many aspects of being chronically sick that healthy people completely underestimate, not out of malice, but because they don’t have to think about it. The well-intentioned assumption is that when one thing doesn’t work I can just try something else and eventually I’ll find the “right” treatment. In practice this protocol is completely unsustainable.
Trying to treat a chronic condition is mentally exhausting. I make decisions about my treatment and health constantly. The potential considerations are often endless. What should I try and what should I put on the backburner? Who gets to have a say in my treatment choices? Doctors? Family? Friends? The internet? This one guy who wrote a book about how he’s cured it all with one simple, amazing treatment? How much will treatments cost my family? What are the risks or possible side-effects of any given treatment? What time of year is it (will allergies or flu/cold season make me more likely to flare)? How much energy do I have for complicated or physically demanding treatments? What will the recovery period be between attempted treatments? When is it time to stop trying one thing and move on to the next?
Between treatment experiments I usually experience a physical crash. A medication will make me sicker or cause my brain chemistry to go off balance, making me feel out of control with anxiety or depression. Or I’ll overdo it in physical therapy and land myself in bed for a week. Or I’ll schedule too many appointments in one week and promptly come down with the flu or a cold that takes weeks to recover from. It’s mentally and physically draining, but the emotional strain is even worse.
I am constantly managing and monitoring my emotions and expectations, beyond looking carefully for the emotional side effects of medications, I struggle to stay just hopeful enough to keep trying treatments without falling into utter despair when 9 out of 10 of them either do nothing or make me feel worse. I feel guilty when treatment options fail, always wondering if I should stick it out for another couple of weeks, just in case. I feel nervous before trying every new medication, wondering how many days or weeks I might lose to bad side-effects or worsened pain this time. I feel protective of my medical choices, but also worry constantly that I am being stubborn and choosing to stay sick if I’m not willing to try every single treatment or pseudo-scientific miracle cure suggested to me. I feel almost constant grief that I don’t know how to process or work through, so I find myself panicked to get out of the situation that’s causing it. And if I am being honest, I know that by using that grief to force myself to try treatment after treatment, I am stealing life from myself.
There is so much pressure as someone with a chronic illness to work towards “getting better.” Beyond societal definitions of worth and cultural fears of illness and death, I am acutely aware that even the most understanding loved ones “hate to see [me] like this.” I feel desperate to be able to give them a version of myself and my life that isn’t painful for them to witness, even though I don’t know if that version of me is possible. And after years of not improving “hate to see you like this” starts to sound like: “hate to see you.” Heartbreakingly, desperation, whether for myself or for the sake of the people I love, is neither sustainable nor effective.
There are no easy answers here. However, I do know that by dedicating the vast majority of my energy to trying to feel well enough to have a (likely unattainable) normal life, I am depriving myself of life right now. I am so exhausted and grief-filled that I can barely write, I don’t have energy for hobbies or passions, I don’t have energy to make new friends, or date, or look for community, often I don’t have energy to leave my house if I’m not going to an appointment or buying groceries. I am investing so much in trying to achieve something that is out of my control that I don’t have anything left over to invest in the dreams that matter to me most. Many days I feel like I’ve completely forgotten how to have dreams or goals beyond “not feeling like this.” I am trying to embrace the complexity of emotions that comes with this. I am allowed to wish I wasn’t sick, I am allowed to be angry about being sick, but I am also allowed to accept that I am sick, and that physical health is not my purpose in life.
As this year ends, I am working to imagine a future for myself where I feel like full person without health as a prerequisite. This is challenging when I feel constantly bombarded with cultural messaging that declares that physical health is not only imperative to happiness and success, but also a marker of moral character, beauty, and worth. On some level it seems innocuous to encourage people to prioritize health, but when I buy into that narrative I lose so much of myself. I am learning that it doesn’t improve my life to prioritize my physical health over my emotional health, my sense of self, my passions, or my connection with other human beings. For now, letting go of the health obsession means designating periods of time where I am not trying anything new, and saving energy to invest in all of the things I am besides a sick person. This is a complicated task, being chronically ill effects every facet of my life, but it is detrimental to continue viewing myself as a project. I am learning to set aside space for just being a person. I am internalizing the belief that the person I am is far more valuable than my health, and the she can exist fully and unapologetically with or without illness.
[image description: a panoramic shot of a green meadow lined with autumn trees, Hailey is laying in the grass in the corner of the photo and looking up at the sky.]