30 Things About My Invisible Illness

This post was originally published on September 18, 2012. It was updated on February 5th, 2024 to include all my new diagnoses since then!

1. The illness I live with is: Hashimoto’s, Celiac, Interstitial Cystitis, “unspecified connective tissue disease” (probably Lupus, but too mild for an official diagnosis), PCOS, endometriosis, gastritis, and depression… so far!
2. I was diagnosed with it in the year: For Hashimoto’s and Celiac, in 2011, at the age of 22, shortly after graduating from college. IC happened in 2014, probably triggered from getting into kombucha and drinking way too much of it. “Lupus” was in 2015, but had been on my radar since 2011 when my ANAs first came back elevated, and although I’ve had PCOS and depression since my teens I wasn’t diagnosed with endometriosis and gastritis until 2023 at the age of 35.
3. But I had symptoms since: I remember having some problems (depression, mania, constipation) as early as age 7, and most of my other symptoms (joint pain, chest pain, dysmenorrhea, abdominal pain, headaches) began around age 13. The IC diagnosis happened within a few months of my symptoms starting, although I’ve recently begun to wonder if it might not be bladder endometriosis instead of IC (based on a recent laparoscopy that found it all over the outside of my bladder). It took a long time for any of my doctors to admit I might have Lupus, about 5 years, and it’s still not an official diagnosis 15 years later. Apparently I had gastritis in 2010, but my doctor didn’t tell me that. I only found out when I asked for their records after I was diagnosed with it by a different doctor in 2023.
4. The biggest adjustment I’ve had to make is: Learning to love my body, lifestyle, and life in general when I am constantly juggling these problems as well as the more common ones of career, housekeeping, friendships, etc. The most overwhelming one is food, because it’s just a lot of work to get food on the table I can eat with confidence it won’t make me feel bad. I have to find a lot more time to take care of myself than most people’s daily budgets allow for, and I don’t usually have a lot of energy to work with in the first place.
5. Most people assume: That I am perfectly capable, and the disappointments in my life are simply from lack of trying and/or lack of focus. I do think I could do anything I set my mind to, but right now my mind is 100% set on “protecting my health for the long term”. I don’t have the time or energy left over to “have a respectable career” or even “do my hair and makeup, like, ever”.
6. The hardest part about mornings are: Budgeting for the day ahead. I know as soon as I open my eyes that I need to have enough food for the day for two of us… while keeping the place clean, getting some work done, and trying to find time for the things I actually want to do like dress up in something other than pajamas or spend quality time with my partner, family, or friends while I still feel up to it.
7. My favorite medical TV show is: I don’t watch medical shows, but I did like Scrubs when it was airing. I don’t think it holds up well, but I don’t think I could watch a medical show that took itself seriously. They’re so heavily dramatized and the treatment of patients is completely unrealistic based on my experience.
8. A gadget I couldn’t live without is: My computer? I don’t have very many gadgets. I do love my Blendtec and InstantPot. “Quick and easy” is my deal, which includes clean-up, so I often just throw a salad together. One bowl, one fork, in the dishwasher, done. On the other hand, I don’t know what I would do without a computer to stay in touch with everyone and the world at large.
9. The hardest part about nights are: Winding down enough to sleep. I have insomnia and while I get exhausted easily, I am rarely sleepy. I toss and turn all night and often wake up as exhausted as I was the day before.
10. Each day I take: Antihistamines, a few vitamins, an anti-depressant, a proton pump inhibitor for my gastritis, arthritis cream, and maybe some painkillers or laxative… I use an iPhone app for habit tracking that’s been very helpful for remembering, but my gastritis med can be difficult because I have to take it an hour before I can eat anything and I don’t always have time to both take it and eat breakfast before my day has to start.
11. Regarding alternative treatments, I: am skeptical of a lot of things, because almost everything I was sold early in my illness was a waste of money. There’s a lot of cash to be made in the wellness industry and its easy for big companies or well-meaning but ill-informed people to prey on those of us who are desperate to feel better.
12. If I had to choose between an invisible illness or visible I would choose: That’s a tough one. I’m sure people with visible illnesses get tired of wearing it like a badge for all to see so that even on your good days, you have to deal with it. On the days I feel great, I’m glad no one can tell that most of the time, I don’t. On the other hand, hardly anyone takes me seriously when I feel like crap. I don’t like when people say “but you look great!”, because that is no comfort when you feel like hell, or ask how I manage to stay so skinny. “Here, have my autoimmune diseases,” I want to say. “You’ll get migraines if you cheat on your restricted meats-and-veggies diet but your gastritis will give you horrible nausea anyway, so have fun!”
13. Regarding working and career: I haven’t quite figured that out yet. I obviously need to make enough money to pay for cost of living, including medical expenses and my restricted diet, and it would be nice to save for retirement someday. However, I need a job that is low-stress, has flexible hours for the days I am really sick, and still allows me enough time in the day to take care of myself and family. I know a lot of Hashi’s patients that work from home as novelists or editors–which, as a kid, would have sounded like a dream to me–but I find I don’t really have the mental focus for, well, those entirely mental tasks. I think I do best with work I can sort of tune out during. The best job I ever had was as a janitor. Sure, I was mopping floors all night, but I was also listening to audiobooks, music, and Spanish lessons!
14. People would be surprised to know: That I am not nearly as strong as the face I present. I don’t break down and cry easily, but that doesn’t mean I’m not feeling things. I have to ignore a lot of things that worry me if I’m ever going to manage to get out of bed and get on with my day. Staying positive is really hard work, and there are a lot of days I just can’t get up and do anything.
15. The hardest thing to accept about my new reality has been: Having to make compromises to accommodate my health. Giving up on certain dreams, missing out on certain relationships, having to prep every last thing I eat from scratch by myself….
16. Something I never thought I could do with my illness that I did was: Work a full-time manual labor job and support myself 100%. It only lasted for 6 months because the late-night hours caused too much insomnia, but I think I will always look back on that job as a real triumph. It came during one of the darkest times in my life and proved that I was more capable than I had imagined. I made decent money, worked long hours, got a lot of exercise… and got to play with puppies!
17. The commercials about my illness: I don’t think there are any. Occasionally I see some that have to do with autoimmune diseases (like psoriasis), but I also haven’t had cable in a decade.
18. Something I really miss doing since I was diagnosed is: Theatre. I did it all through high school, and it was a blast. I miss long rehearsals with fun, talented creative types. I wanted so badly to do it in college, but I couldn’t do that kind of stuff anymore. I can’t commit to activities that long, regularly-scheduled, or mentally and physically demanding. I also miss just being able to pull food out of a box in the pantry and eat it right away without having to think about it. Boy, do we take “not cooking every time we’re hungry” for granted.
19. It was really hard to have to give up: Oh, geez. When I think about foods, it doesn’t feel so hard now that I’ve been without them. I had bad cravings for easy gluten foods like cereal and cinnamon rolls for a long time… often wanted to indulge in ice cream or cake… but now that they’re gone, it doesn’t seem so bad. I think the hardest thing to give up was my entire idea of what my future would be like. Getting diagnosed with a chronic illness forces you to wipe clean the slate you’d planned things on and start fresh: What am I realistically capable of now, career-wise? And will my current job accommodate my new-found needs? If I have to look for a new one, where do I start? Is my casual relationship ready to get as serious as I’m now going to require? If so, is that really what I want, and if not, what’s dating going to be like now? Will I be able to raise–or even afford–kids someday? Will my friends understand that I can’t keep up with their lifestyles any more and will need to make other plans if we are going to stay in touch? You pretty much have to second-guess everything you do and everything you ever thought you’d do.
20. A new hobby I have taken up since my diagnosis is: Gaming, I guess. I was always a bit of a gamer, but started to grow out of it in high school as more of my life took place outside the house. Since getting sick, though, I play them all the time. It’s the easiest way for me to escape for a bit, do something “normal” and not disease-related, and most of the time, it’s the only social activity I get. With friends and family on wildly differing schedules, its easier for us to just meet up digitally. I’d like to take up a laid-back, in-person social hobby, but I can’t imagine what that’d be. Book club? That idea has me flashing back to too many high school English round circle discussions of books I hated having to read….
21. If I could have one day of feeling normal again I would: Goodness, I don’t know. I’d like to think I’d do something crazy, catch up with friends I haven’t seen in a long time, or indulge in all the foods I used to enjoy so much. But I think that all I want is to sit back and relax. Just one day where I don’t have to worry about anything. I think it’s not so much that I’d like to feel normal again, but that I’d like to wind back time to before I got sick, when I was surrounded by friends and felt the world was full of opportunities and possibilities. I feel like one day of feeling normal would be tainted by everything I’ve already been through and know I’d have to look forward to when the day was over.
22. My illness has taught me: Everything I’ve learned about nutrition, environmentalism, and general lifestyle changes aside, I’ve learned to appreciate “not being in pain”, which I think is something everyone takes for granted. I’ve also learned who my closest friends are: The people that call when they hear through the grapevine that you aren’t doing well. The people that pick you up when your car breaks down and you have a long-awaited doctor’s appointment to get to. The people that unexpectedly do simple things for you without being asked, like bring over some groceries, help clean the kitchen, or show up for an impromptu movie night after you cancel “going out” because you’re “not feeling up to it”. I don’t know very many of those people, but I will never forget the little things they did for me.
23. Want to know a secret? One thing people say that gets under my skin is: I already mentioned “how do you stay so thin?!” and “you look great!”, so I’ll go with people who say things like “Oh, I could never give up [insert dangerous food]. I’d rather live a short unhealthy life than a long unhappy one!” At first, when I started hearing this, I thought it was a bad joke. But I am hearing it from people who are utterly sincere and honestly use this as an excuse to not fight off the health problems they have. (It is especially aggravating from people whose health problems could be totally cured by diet changes. Cured. Do you know what I’d give to be able to cure myself just by giving up [insert food here]?!) First of all, as if food is the only thing that can make people happy. As if food is the only thing worth living for. I want to shake these people. “Are you honestly telling me that you’re ready to have a heart attack right now? Right now. This instant. You don’t get two weeks’ notice for you to set your affairs in order and say goodbye to your loved ones. Just BAM, dead. You’d have no regrets? You wouldn’t mind missing out on your kids’ graduations, weddings, and grandkids for the sake of a cheeseburger? How do you think your kids feel about that?!” Honestly, the whole concept is nuts. NUTS.
24. But I love it when people: Surprise me. Someone I haven’t spoken to in a long time calls to check in. A stranger says something nice. Other sick people are more compassionate, loving, and supportive than anyone, even to complete strangers. Getting random words of encouragement from random people for no reason other than that they’re doing something nice.
25. My favorite motto, scripture, or quote that gets me through tough times is: I wish I had more of these. I don’t really find solace in quotes or anything anyone else says (unless it is said specifically to or about me, because nothing feels better than being told you’re loved or appreciated).
26. When someone is diagnosed I’d like to tell them: It’s a tough road, but you’re not alone and you’re going to be okay. There are so many resources out there to help you along, you just have to keep your spirits up enough to look for and make use of them. Health and well-being are worth any sacrifice you have to make to get there, and while it may not seem that way now, those sacrifices don’t seem as huge once you’ve made them. You’ll get there, and we’re all here to help, support, and love you through it!
27. Something that has surprised me about living with an illness is: I was surprised to find that getting diagnosed did not solve any of my problems. The drugs don’t work. Diet changes are only a partial solution. There is no quick-fix or one-size-fits-all treatment. It’s all about trial and error and getting well (or even regularly feeling “just okay”) could take years of experimenting, optimism, and determination, and it doesn’t work for all problems. Half the doctors I met had no idea what my diseases actually were, and none of them actually knew what to do about most of them.
28. The nicest thing someone did for me when I wasn’t feeling well was: Well, my partner has come through for me a lot over the years. But I can think of a moment that surprised me. I had just been (mis)diagnosed with MS and I didn’t really want to talk about it, but I felt like I had to say something or explode. I just posted a short Facebook status: MS. Brief, just out there in the world and off my chest. Since no one knew I was having health problems, I didn’t think anyone would make anything of it. But a girl I had never really been that close to called almost immediately to ask how I was. I will never forget that. No one else ever said anything about it, which was fine–I was a little embarrassed to have posted about it. I didn’t want anything said about it. But the fact that she called still means a lot to me.
29. I’m involved with Invisible Illness Week because: I think it is important for people to realize how pervasive these diseases are. There are a ton of sick people in the world, and we all probably run into several every single day without realizing it. I don’t think we should have to broadcast our illnesses to get the care we need, but right now, that’s the way it is. The more people know what we’re going through, the more people can be helped by that knowledge. Although autoimmune diseases are the result of a cocktail of factors, I wonder if I would not be sick today if I had been brought up on a gluten-free diet. Being sick for the rest of my life is not worth the 20 years of bread and cereal I enjoyed before getting diagnosed and I hope no one else ever unknowingly makes that trade too.
30. The fact that you read this list makes me feel: Hopeful that raising some awareness of what these kinds of illnesses entail will have everyone thinking twice about how they take care of their own health as well as how they treat others that do have–or might have–health problems. If you know someone with an invisible illness, I hope you’ll consider doing something nice for them. I’m also grateful to be able to put these words out there and appreciate beyond words all of my readers and fellow bloggers. You guys mean the world to me!

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