To the Person With Chronic Illness Who Feels Like You’re Falling Behind
I’ve really struggled for the last few years with feelings of guilt and inadequacy. We live in a world that puts a heavy emphasis on health equaling worth or value. If you’re not healthy, you’re not valuable to society and you’re to be ignored or whispered about. At least, this feels true in the U.S.
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The stories of disabled people only make the news when it involves some abled person who is perceived as doing something kind for a disabled person, or some disabled person “overcoming” their disability in some way (according to abled people). It seems people don’t like talking about disability much. Many people assume disabled people are lazy, depressed or faking. Illness makes people incredibly uncomfortable, especially if it isn’t physically obvious and you somehow break the stereotype of “disabled.”
I’ve internalized a lot of this. I’m really harsh on myself, even though logically, I’ve done really well considering my circumstances.
It is graduation season again, so this has dredged up a lot of feelings. There has been nothing I’ve wanted so much than to receive my degree and get into my desired career. I see a lot of friends moving on to graduate school or entering their career fields. And I feel so f*cking behind (even though I’m actually only a semester or so behind).
The rational part of my brain keeps reassuring me it’s OK. It’s OK that I’m not done yet. I mean, after all, during my freshmen year I underwent chemotherapy while working full-time and attending school full-time. It’s OK because I have moved twice during my time attending a university — I moved from Texas to Alaska and then from Alaska to Virginia. It’s OK because I’ve switched between three universities. It’s OK because I’ve been fighting chronic illness for about 9 years now. It’s OK because I’ve managed a solid 3.7 GPA during my time at a university. It’s OK because this semester I underwent a complicated brain and neck surgery and still pulled a 4.0 GPA for the term. It’s OK because I was doing schoolwork two days after my brain surgery.
It’s OK and I shouldn’t compare myself. It’s OK because grades don’t matter that much. Still, here I am weighing them as if they should count for something in my existential crisis. And yet, the emotional side of my brain constantly fights these feelings of worthlessness that have been instilled in me from an early age, from my father and from society as a whole who I believe, in general, doesn’t like to talk about disabled people as successful, intelligent and complicated individuals.
And I just want so badly to be able to do something with myself. My husband told me if my health prevented me from using my degree, it would be OK. I’d get my debt forgiven and we’d find a way to make it all work. But I don’t want that. I want to contribute to society in a meaningful way. If money were no object, I would go into research after getting my doctorate. But money is an object, and it is a barrier for me.
It feels so stupid. I can comfort a friend and reassure them to the ends of the earth. But for the life of me, I cannot treat myself with that same empathy and reassurance. I just have this crushing anxiety that I will never be anything or anyone. It’s all I want in this life. I don’t care much about money or things. I just want to do something valuable with my time. Whether it’s research in neuroscience, or therapy for sick people like me, or advocacy for chronically ill and chronic pain patients… I just need something. I need fulfillment — a reason to wake up for myself, not for the people I love.
For peace of mind and heart, I want to share this short letter. This letter is to myself, in the future, and it is to any fellow human with disabilities, illness and pain.
Dear friend,
It’s OK to grieve your life. It’s OK to be sad, frustrated and tired. It’s OK to give up for a day, maybe two days, maybe a week. This life isn’t easy for people like us, and that is OK. I wish I could tell myself this. Some days I believe it and some days I don’t, and I know that’s OK, too.
But there is something out there for you. That “something” out there for you, for your fulfillment and for your life — it may come at a time when you least expect it. It may not be what you had originally desired and hoped for.
It doesn’t really get better — I don’t think that is the nature of chronic illness. But it gets easier to live with. We get stronger and more adapted to coping.
So when you’re ready to get it together, I’ll be here and those people who love you will be here for you, too.
With love,
A fellow warrior
Lead photo source: Thinkstock Images
Shiloh Davison is a passionate writer and voice in the disability community, and currently an undergraduate student at Old Dominion University. She is married to an active duty U.S. Air Force member and currently resides in Virginia. She is autistic and deals with chronic pain and chronic illness. She has Ehlers-Danlos syndrome, hypokalemic periodic paralysis and several EDS-related conditions.
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