When a Doctor Said I Needed to Choose Which Disease to Treat
For about the millionth time in my life, I wish I were old. I wish I were 70 going through this. Because I’m a fighter, I know I’ll get through it. But if I were 70, I’d have all these memories to look back on while in the hospital. I’d be able to smile at my wife or husband, reminiscing about all those years running around after our kids or doing the jobs we wanted.
But I’m not 70. I’m 20. I’ve been battling systemic onset juvenile idiopathic arthritis (JIA) for more than 16 years. And the memories I have to look back on are the six months I was able to cycle into town every day when I was 14. Or the musicals I used to act in for a few years. I can probably count the memories that don’t revolve around hospitals on one hand.
My childhood was spent more with doctors than children. There have been definite ups and downs during those years. Being systemic, it means the symptoms are more rare, and, worst of all, means my body tends to become immune to the meds pretty quickly. I’ve been on all the available drugs. For the last two years, every one I tried or been on landed me in the bathroom or the hospital for a few days. For about two years, the meds have caused severe bowel and stomach problems, ranging from inflammatory bowel disease (IBD), ulcerative colitis, stomach ulcers and damage in my esophagus.
Why is this important? A few weeks ago I was hit with the harsh truth that I’m going to have to choose which disease I want to live with for the rest of my life pretty much untreated. I’ve been trying to write about this for weeks, but I felt numb. I felt like I was drowning. Going to my psychologist every week and talking to a few friends have helped me get out of this slump, but I still need to address it.
I’m scared. I’m terrified, to be honest.
I’ve been seriously sick since I was 4. It’s all I’ve ever known. I’ve been in remission before for a few months at a time throughout my life. Because of that, there’s always that hope that “well, some day you’ll get better” or “this won’t last.” But it’s been four years since I’ve been at a tolerable level of wellness. For some reason, my brain can’t get the concept of “this is it, Katherine.” It wouldn’t sink in. It didn’t sink in when my rheumatologist said we were out of options. It didn’t sink in when I was hospitalized from extreme bowel problems. It didn’t sink in when I couldn’t return to college. It didn’t hit me when my psychologist told me to put my body first.
It hit me like a ton of bricks after I had a traumatic experience getting biopsies of my stomach done. My gastroenterologist said it looked like I would need to choose a disease. How can I? How can I choose? Do I choose to go back on the cell blockers, chemo, anti-inflammatories and ease my JIA enough to walk more than 10 minutes?
Or do I choose to come off those medications and keep my bowel disease at bay with careful diet and rest? If I choose the first, I’ll most likely end up in hospital again, continue to become dehydrated, faint and continue to watch my skin turn sickly, my weight drop, my skin to peel and my hair to fall out. And that’s not including the sheer pain in my bowel and stomach.
Or do I choose the latter? Do I choose to keep my nutrients in my body like I am now? But my joints will become red hot and inflamed, and I’ll have a difficult time breathing at night because of the fluid around my ribs pressing against my lungs.
How do you choose? They’re both bad. Both are keeping me from getting an education. Both have me in pain. Both make my mental health hard to maintain. Both make friendships hard. Both existences are lonely. The irony is I wouldn’t have digestive problems if it wasn’t for my JIA. The drugs that have kept me alive are the same ones that have damaged my body.
I’ve always been the kind of person who tries to love my illness. It’s a part of me. But how do I love the part of me that takes over all the other parts of me? My education. My ambition. My self-worth. How do I love you, JIA? How do I not resent you? Why is it that the only way to help you is to kill you off with poisonous medications that damage my body so badly? I’m scared living in this body. My future is so uncertain. I’ve failed so much more than I’ve won this year.
I’m not giving up. I’ll never give up. But some days, it’s all I want to do to give into you.
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