30 Things About My Invisible Illness

Lately I have been thinking about my health on an almost constant basis. I am always trying to overhaul my diet, figure out how to balance exercise so I’m not exhausted and also not getting lazy, and now also trying again to balance it with teaching so that I don’t end up short.

Now, I have to remind myself, and whoever really does read this, that my illnesses are so invisible, for many, as to not even matter most of the time. My parents and close friends, I know, have a pretty good idea of my problems, but most people don’t. I haven’t told coworkers here, or people at church, or any of that, to any extensive degree; part of this is because I spend about 85% of my life feeling great…until something happens and I feel a hundred kinds of terrible.

Anyway, one inspiration I found was the website But You Don’t Look Sick, which was started by Christine Miserandino, a young woman with lupus, a few years ago. I found it while reading the blog of another lupus sufferer, the actress Mo Tanchareon. When I read these, I can remind myself that my illnesses are really not that bad, compared to some- and still commiserate at the same time. Well, today I was reading Christine’s version of an apparent “meme” that has been going around called “30 Thinks About My Invisible Illness You May Not Know”.

Ever one to take part in a meme/whine about myself, here we go.
1. The illness I live with is: This summer, I got  a laporoscopy that found signs of endometriosis, fibroids, and adenomyosis. I also had doctors determine that I had irritable bowel syndrome awhile ago. I also think I have at least moderate lactose intolerance; basically, there are a lot of foods that are on my “do not eat” list.
2. I was diagnosed with it in the year: For IBS, probably 2009. For endo/everything else, 2008-2009 unofficially, 2011 officially.

3. But I had symptoms since:  Endo-related symptoms, since I was a freshman in high school. I’ve been having various problems with food almost as long. I’ve found, though, that doctors and other Powers That Be tend to brush off a lot of things as “part of puberty” when you’re under 18.

4. The biggest adjustment I’ve had to make is: Knowing what I can’t eat. I’ve been a vegetarian a long time, but now I have to remind myself that more than a little cheese will make me sick, and I had to give up cow’s milk altogether,  and broccoli is basically enemy #1 for people with IBS. I thought I was eating healthy for so long because I ate so many fruits and vegetables, and it isn’t that simple.

5. Most people assume: that endometriosis and other problems only bother affected women during one week of the month. I get pains throughout my cycle, and menstruation is not even always the worst.

6. The hardest part about mornings is: Being hungry and having to properly time when I eat breakfast. If I forgot to take my probiotics the night before then I know that almost anything I eat will make me sick; if I eat too early, I eat too much in a day; if I eat too little, my blood sugar goes nuts.

7. My favorite medical TV show is: Eureka? I’m not much for med shows, but I like that they can solve almost any medical or other life problem in this show, or are willing at least to try.

8. A gadget I couldn’t live without is: These days it’s my running watch. I still barely know how to use it, but my heart rate monitor has become something of an obsession.

9. The hardest part about nights are: Reminding myself when to stop eating, to drink more water, to do my stretches and other exercises, and to take my supplements, not to mention going to bed early enough. If I do all of this, I don’t have a lot of pain; if I forget something, it can get bad quickly.

10. Each day I take 3 pills & vitamins. That’s 2 probiotics and a multi; ibuprofen during some parts of my cycles isn’t included here, but can be as much as 9 a day.

11. Regarding alternative treatments I: would do it if it worked. Tea, exercise, and diet, all help my problems up to a point, and then it stops. I haven’t tried meditation or acupuncture or anything that intensive, and I would like to, I just don’t think that any of these things will “cure” you.

12. If I had to choose between an invisible illness or visible I would choose: I suppose I would choose invisible, because if anything, it’s easier to get people to not judge you based on illness if they don’t know, even though that has its own bunch of fun.

13. Regarding working and career: For me, my dreams haven’t changed because of my illness.

14. People would be surprised to know: That my problems are not really that uncommon. Many women have issues with their digestive and reproductive systems, but either they are not intense enough to be diagnosed, or they don’t realize it until later in their lives.

15. The hardest thing to accept about my new reality has been: Getting people, especially doctors, to take me seriously. I thought I had endometriosis by the time I was 14, spent every month puking, sleeping fitfully, and missing school or other functions, and it took nearly a decade to get diagnosed…although a close second was realizing how much my illness shaped my life before I even realized that it existed.

16. Something I never thought I could do with my illness that I did was: Get physically fit. I want to run marathons and ultras; while I am not that strong quite yet, 5 years ago I thought I would struggle with my weight forever, because the thought of taking on physical challenges was terrifying.

17. The commercials about my illness: suggest that taking birth control hormones will turn every woman into a stick thin socialite every day of the month. The reality is that those medicines can cause weight gain or depression, and sometimes just don’t work.

18. Something I really miss doing since I was diagnosed is: nothing; it was so recently that I was officially diagnosed, I had already found a lot of my coping mechanisms and such by then.

19. It was really hard to have to give up: whole grains. I used to love them because I thought they were tasty and healthy, but they are just agony for me to  digest.

20. A new hobby I have taken up since my diagnosis is: It’s not really new, but I knit more than ever now, and when I’m feeling bad it can be one of the only things I can do besides watch television. It helps me feel like I really can bring more order to the universe.

21. If I could have one day of feeling normal again I would: cook something really good, like whole grain pasta with broccoli and cheddar, that I really like but is full of foods I should avoid or only eat in very occasional moderation.

22. My illness has taught me: That there is a big difference between “normal” and “common”; and that even with an illness, I can still be one of the healthier (when not in pain) people I know, if I take good care of myself.

23. Want to know a secret? One thing people say that gets under my skin is: “your pain might go away when you have babies”, “but don’t you want to have children before you get some kind of operation?” or something to that effect. Not everyone wants babies, can have babies, or should have babies; a woman’s health should not take second fiddle to the mere potential that she could one day carry a child.

24. But I love it when people: Tell me they like something I do, even if it’s just a hat I knit, or the shirt I wore today, or the fact that I went for a run on a hot day. It makes me feel better about all the trouble I’ve had with doctors/people in authority.

25. My favorite motto, scripture, quote that gets me through tough times is: There are so many, but one I love: “If I knew that the world was going to end tomorrow, I would still plant my apple trees today.” Martin Luther said this, and I like to think of it as a reminder to live now, and when you think about tomorrow, focus on the positives.

26. When someone is diagnosed I’d like to tell them: It’s better than not knowing; if you know, you can do something to make it better.

27. Something that has surprised me about living with an illness is: How different it is from person to person. I can mostly live my life; some people can barely get out of bed with their illnesses. And it reminds me that my life is not so bad, really.

28. The nicest thing someone did for me when I wasn’t feeling well was: get me something to make me feel better. Things like a cup of tea or an extra blanket can seem like life savers sometimes.

29. I’m involved with Invisible Illness Week because: While the last thing I want to do is complain, it’s time I made myself think about, and write about, my illness, and for others to see; most of us are not honest with ourselves, let alone others, about what is easy for us, and what isn’t, in our illnesses.

30. The fact that you read this list makes me feel: cathartic.


Author: elizabethlorraine

Writer, actress, runner, knitter, and geek.

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