My name is Amy. I'm 22 years old and both from and living in Eugene, OR, I graduated Phi Beta Kappa from Swarthmore College, I like linguistics and bold lipstick, and I have a chronic illness. I have been ill for a little over 5 years, since my senior year of high school. I have Chronic Fatigue Syndrome and Orthostatic Intolerance, which basically means my blood pressure is dangerously low without medical assistance, I can't partake in much physical activity without exacerbating my already-low energy levels, and overexertion leads to me being unable to get out of bed the next day. Ideally, I would sleep 14 hours a day, but thanks to modern medicine and the joys of half-caf coffee, I manage on 8-10 most of the time.
My illness is not visible. I have no scars, no cast, no wheelchair. Physically, I look healthy, even fit. Those who didn't know me at my sickest, when I literally could not stay upright for more than a couple of minutes, when I regularly collapsed to the ground, when even taking a shower was an accomplishment, they don't always "get" it. How could they? I've learned to live with and work around my illness. I don't let myself get to the point where there will be physical evidence of my impaired health, not anymore. Years of living with my illness has taught me what I can and cannot do, and I have learned to listen to that. I'm extremely careful not to overexert myself, to find somewhere to sit whenever possible, and to some, that may come off as whiny, paranoid, lazy. I've learned not to care about what others may think. My first priority is, and will always be, keeping myself healthy enough to function. I am at heart a pleaser, but living with a chronic illness has forced me to be okay with putting myself first.
I am blessed that my life is such that I get to be selfish like that. I have no children to take care of, no bills that I must pay. I am intelligent and academically-inclined, and was lucky enough to get accepted to and receive funding from grad school, where I can structure most of my time around how I am feeling. My friends and family have been incredibly supportive, and I am so lucky to have them, though I often feel I don't deserve their patience.
My mother has Rheumatoid Arthritis, along with several other chronic illnesses. While the worst I suffer from is weakness, fatigue, and exhaustion, she lives with constant pain, on top of fatigue and all the rest. But, like me, it isn't immediately obvious that she suffers from ill health. While it's been challenging to lose my "healthiest" years to my illness, I at least have had the advantage of being able to structure the trajectory of my life around my abilities and lack thereof. Getting chronically ill at 50, with children in college and a mortgage, is a whole different story. My mother's whole world has had to shift, and she has been forced to reevaluate her priorities.
I don't know if I can say that I can offer any real insight. After all, everyone's experience is unique. But as a person who has both suffered from a chronic illness as well as had someone close suffer from an illness, I feel like I've learned some things. If you haven't yourself had a debilitating chronic illness, you cannot understand. That doesn't mean you can't be supportive, can't try and understand, because you can, and you should. It's simply to say that no matter how hard knowing someone with an illness may be, their lives are orders of magnitude more affected than yours. You may feel inconvenienced that they cannot do the things they used to do, that they are not there for you like you wish they were. That's completely understandable. But you have to realize that they feel robbed, too. Everyone loses different things with the onset of an illness, but no one loses more than the person who has gotten sick.
We all see ourselves as the center of the universe, whether we mean to or not. Knowing someone with a chronic illness changes part of your universe, but being someone with a chronic illness means your entire universe changes. Things that would have been life-or-death before become inconsequential. When I got sick in high school, I stopped being able to go to class or do my work. I got my first B, which, as an overachieving perfectionist, should have been the end of the world; I was just glad I passed. Actually, I was just glad I was alive; I was freaking ecstatic that I passed and could graduate. I've come a long way since then, and my life is better than I could have possibly imagined as a 17 year old, but there is always the shadow looming over me that I could get worse again. I don't let it run my life, but neither do I ignore it.
Everything I've said so far is true not only for physical chronic illnesses, but for psychological ones as well. I have suffered from debilitating anxiety and depression since I was 11, but have, again, been extremely lucky in that the treatment I have received has been very effective, and I now consider myself (and have for a couple years now) an overall happy, relatively well-adjusted person. But having a physical illness on top of depression? Sucks. A lot. Everything is compounded. The niggling fears you have that you might never be able to do the things you enjoy become the overwhelming swamp of despair that everything good in life is gone. The isolation and loneliness you feel from being forced to go through your body betraying you turns into the unrelenting dread that you will always be alone. The bitterness you feel at being unable to fulfill your duties and desires can be easily overshadowed by the guilt of not being able to be there for those who need you. It is terrible. It feels like it will never end. The only thing that got me through it was the love and support of my immediate family, who never doubted that my illness was a real and present thing, and the friends who were there for me even when I couldn't be there for them. Okay, that and the drugs.
I keep trying to find some nice way to wrap this up, to make it have a point, but it's just not happening right now. Maybe I have no point. Maybe this is just ranting for ranting's sake. I certainly don't intend to say that chronic illness is the worst thing that has ever and could ever happen––that is patently false. But maybe this post will help shed some light on one facet of the world's many and varied burdens. And I hope that is enough.
