This week is Invisible Illness Week. Obviously, this is relevant to my life.
1. The illness I live with is:
Ulcerative colitis. I have pancolitis, which means my entire colon is affected. It’s a chronic autoimmune disease that causes ulcers to develop in the colon, which causes severe diarrhea, intense pain, and blood loss. When I was diagnosed, the colonoscopy showed that basically my entire colon was ulcerated, through about half of the mucus layer.
2. I was diagnosed with it in the year:
3. But I had symptoms since:
Really, I think the symptoms only started about a month before I was diagnosed, so around April 2013.
4. The biggest adjustment I’ve had to make is:
My diet is severely limited. (I was already a vegetarian prior to my diagnosis.) I don’t eat gluten (wheat, rye, spelt, or barley), dairy, eggs, corn, caffeine, artificial sweeteners, or dyes. I can’t eat any raw fruits or vegetables, and I can only eat some cooked vegetables. Basically, I’m supposed to avoid fiber as much as possible. I don’t know if you’re aware, but corn is in EVERYTHING in the United States because we subsidize corn so heavily. Seriously, next time you’re grocery shopping, read the labels: cornstarch, cornmeal, corn syrup. A lot of gluten-free products use corn instead of wheat. I spend forever in the grocery store reading labels, getting dirty looks from other shoppers because I’m in the way. Eating out is very difficult, although I’m lucky to live in a hippie town where food allergies are understood. I can get gluten-free vegan cookies at the deli downtown, there’s a vegetarian restaurant that does vegan buckwheat pancakes, there’s a little place that has brown rice pasta, and the Asian restaurants have rice-based dishes I can eat. But it involves a lot of planning, reading menus online beforehand, and questioning servers about ingredients. The worst was having to do that when I went to brunch with my boyfriend’s family, and the waitress had to keep running back and forth to the kitchen to ask the cook about ingredients. I was so embarrassed I finally just ordered a bowl of plain oatmeal.
I’ve also had to adjust to the frequent bathroom trips. I know where the bathrooms are in every store where I shop. I know where the public restrooms are downtown. I plan when it’s safe to leave the apartment based on when I last used the bathroom. I wanted to go to the 50th anniversary March on Washington with my boyfriend, but I knew I couldn’t go because there wouldn’t be bathrooms immediately available.
5. Most people assume:
I think they assume I’m fine. It’s the old, “But you don’t LOOK sick” thing. Well, no, but I could show you pictures of the inside of my colon that would probably make you sick.
Other people who know I have a GI illness think it’s just a stomachache or a little diarrhea–you know, “Just take some Imodium. It works great!” I don’t show the levels of pain and discomfort I experience every day because it makes other people uncomfortable, so they assume it’s not that bad. They don’t see the 14 pills I take a day or the shots I give myself every two weeks. They just assume I’m being a drama queen when I cancel plans for “just a stomachache.”
6. The hardest part about mornings are:
Nights are worse, really. I don’t know why, but that’s when the symptoms kick into high gear. Sometimes I’m up 4 or 5 times to use the bathroom. It makes mornings hard in that I’m exhausted and sleep-deprived when the alarm goes off at 7:00. Sometimes I turn it off without being fully awake, and then I oversleep and have to rush to get ready.
Sometimes, mornings are hard because I’m depressed. I don’t want to get up and deal with another days of this. I’d rather stay in my nice, soft bed under my nice, warm down comforter and not have to deal with anything or anyone. But then my colon demands that I get up.
7. My favorite medical TV show is:
Grey’s Anatomy. I love it because the characters are so screwed-up and dysfunctional, but they still have lives and careers. It makes me feel better about my prospects.
8. A gadget I couldn’t live without is:
My iPhone. Almost totally unrelated to my illness, although I do use it to track symptoms. But mostly I use it for looking up weird things on Google (I really needed to know how big wild boars get, okay?) and distracting myself with silly games.
9. The hardest part about nights are:
Like I said before, that’s when my symptoms are worse. I’m often doubled over on the toilet for hours. I’m exhausted and dehydrated and just want to climb into my nice, warm bed and sleep, but my body won’t let me.
10. Each day I take __ pills & vitamins.
14 pills, 6 vitamins.
11. Regarding alternative treatments I:
I’ve made more extensive dietary changes than what my gastroenterologist suggested–mainly going gluten-free. I take probiotics in hopes that they’ll help, and I take Saccharomyces boulardii because I have high levels of candida. I’m hoping to try acupuncture soon; there’s a clinic in my town that does it on a sliding scale.
12. If I had to choose between an invisible illness or visible I would choose:
That’s a tough one, but I think I’d go with invisible. Yes, it’s frustrating when people assume I’m not sick, but there are also advantages to that. I’m aware that there’s a certain level of privilege that comes into play with this. There is discrimination against disabled people. I’m sure a lot of it is unconscious, but that doesn’t excuse it. With an invisible illness, I can pass as normal. People don’t automatically assume I can’t do things when they look at me.
13. Regarding working and career:
It makes things difficult. I just got awarded a political organizing fellowship for Organizing for Action, and I’m worried about how well it will work with my illness. There’s a big kickoff/training for all the fellows in the state at the end of the month. I’ll have to travel to Boston, and I’ll meet the bosses and all the other fellows. It sounds stupid, but I’m worried people won’t see me as a professional if I’m farting all the time–and I can’t hold it in. How much of the training will I miss when I have to run off to the bathroom constantly? I’ll have to figure out how to keep my meds refrigerated–I’ll probably have to lug a cooler around. I’ll probably need to bring my own food and hope no one is offended by that.
14. People would be surprised to know:
I don’t always deal as well with this as I appear to from the outside. I tell people I’m okay, it sucks, but I’m coping. Sometimes that’s true, but sometimes it’s not. There are some days when I want to give up, stop taking all my meds, stay in bed, and let the ulcers eat holes in my colon until it kills me. I get so depressed because my life is now so much more limited than I wanted it to be.
15. The hardest thing to accept about my new reality has been:
I feel incredibly alone with it. I don’t know anyone else with UC. There are people who care about me and want to support me, and I do appreciate them–but they don’t fully get it because they’ve never experienced it. I’ve looked for support groups in my area, either specific to UC/IBD or general chronic illness. There are support groups for HIV/AIDS, kidney disease, liver disease, ADHD, and several kinds of cancer, but nothing that fits my diagnosis. So I’m alone.
16. Something I never thought I could do with my illness that I did was:
I’m not there yet. I wish I were, but I’m not.
17. The commercials about my illness:
There aren’t any. Nobody wants to talk about colons and poop. (Luckily, I have no TMI filter.) People talk about heart disease because it’s so prevalent, breast cancer because, face it, people like breasts, childhood cancer because nobody wants to see kids suffer. But nobody talks about IBD. It’s taboo.
18. Something I really miss doing since I was diagnosed is:
My kung fu class. I started studying Indonesian kung fu about a year and a half before I was diagnosed, and I loved it. I’d studied karate in college and found I loved martial arts, so I found a martial arts school on my town. Now I just can’t do it anymore. I don’t have the energy.
19. It was really hard to have to give up:
Fresh fruit. God, I love fruit. Canned mandarin oranges just don’t do it for me.
20. A new hobby I have taken up since my diagnosis is:
No new hobbies, but I’ve been doing a lot of knitting and bookbinding. I also do a lot of mandala work, using oil pastels.
21. If I could have one day of feeling normal again I would:
Go to kung fu and hit some things. Eat lots of yummy food I can’t eat. Spend time with friends.
22. My illness has taught me:
I’m learning to be more patient with myself and accept new limitations, even though I don’t like them. I’m redefining my relationship with my body, learning to be gentle and kind to it instead of pushing it to its limits all the time.
23. Want to know a secret? One thing people say that gets under my skin is:
“My husband/sister/barber/grandmother’s second cousin’s daughter had that, and all s/he had to do was ____________, and now s/he’s totally cured!”
Look, I know you’re trying to help encourage me or something, but that’s really annoying. I’ve tried tons of things from diet to exercise to meds. If you didn’t go to med school, don’t give me medical advice. And don’t get your panties in a twist if I don’t jump on your miracle cure bandwagon, especially when it directly contradicts my doctor’s advice.
24. But I love it when people:
Ask if I need anything or there’s anything they can do to help. The answer is usually no, but it makes me feel better to know that someone cares enough to offer and I have someone to call on if I do need something.
25. My favorite motto, scripture, quote that gets me through tough times is:
I’m not generally big into inspiring quotes and so forth because they make me want to gag–I don’t believe in all that “power of positive thinking” stuff. Sometimes things really suck, and it’s okay to acknowledge it. So, in the words of Meredith Grey, “Not everybody has to be happy all the time. That’s not mental health. That’s crap.”
26. When someone is diagnosed I’d like to tell them:
I’d like to be able to tell them it gets better, but that’s not always true. What I can say is that even though it really, really sucks, it’s survivable. You can still have a life.
27. Something that has surprised me about living with an illness is:
I think what surprises me most is how quickly I’ve gotten used to being sick as my new normal. I’m not thrilled with it, believe me, but I’ve mostly adjusted.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Bringing me flowers and food I can eat. I love flowers, and I don’t get out much when I’m really sick, so the flowers are a nice, bright bit of the outside. And it requires quite an effort to find food I can eat, so when somebody brings me something, I know they really care.
29. I’m involved with Invisible Illness Week because:
There are so many people living with invisible illnesses, and that doesn’t get a lot of attention because, well, it’s invisible. There’s a particular subtype of ableism we have to deal with–the “You look fine, so you must just be making excuses for being lazy” type. People need to be more aware that our limitations are real, and we’re still worthwhile and valuable people.
30. The fact that you read this list makes me feel:
Hopeful. I hope it brings attention and understanding to people living with invisible illness. I hope it contributes, in a small way, to a greater understanding of us as people and our particular struggles.