30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Celiac Disease (a.k.a. gluten intolerance). This has caused me a whole heap of other issues, including debilitating abdominal pain, vision problems, extremely low immune system, irritable bowel syndrome, joint pain/inflammation/tissue buildup, depression, anxiety, atopic dermatitis, thinning hairline, low fertility, miscarriage, heart palpitations, syncope, migraine, aphthous stomatitis (canker sores), athsma, anemia, and probably ten more I have forgotten about for the moment. Oh, and I have hypoglycemia.
2. I was diagnosed with it in the year: 2006, when I was 23. It took five years and an intestinal biopsy to rule out everything else.
3. But I had symptoms since: I was born. In the fall of 2006, however, I developed the debilitating stomach pain that led to the intestinal biopsy.
4. The biggest adjustment I’ve had to make is: the gluten-free diet. It's never easy. I always risk contamination unless I am preparing it myself, using a sterilized work surface and using clean, sterilized utensils. Then I'd feel pretty safe.
5. Most people assume: that it's easy - just don't eat bread. The truth is, there is gluten in nearly everything. Even when I'm the most careful I can be, I still occasionally get contamination and then the onslaught of illness begins.
6. The hardest part about mornings are: finding something to eat. Because of my hypoglycemia, I must eat, and because I'm not a morning person, I'm not exactly firing on all pistons when I wake up. Some mornings I look at what I have, and just wish I could eat a bowl of oatmeal, or a pop-tart.
7. My favorite medical TV show is: none. I don't watch very much TV due to the fact that I don't have TV service. Don't look at me like that, my co-pay is $40! When I visit the doctor at least once a month, there goes the TV budget.
8. A gadget I couldn’t live without is: my cell phone. It has internet access, so I can look on a restaurant's website to see what on their menu is gluten free (if anything). Then I can use my GPS to find the restaurant.
9. The hardest part about nights are: insomnia. I need about 10 hours of sleep to function at my best, and each night I struggle to sleep for hours.
10. Each day I take: between 5 and 10 pills (both prescription and OTC).
11. Regarding alternative treatments I: know there isn't one for Celiac Disease. Maybe there are alternative treatments to my various secondary illnesses, but I haven't looked into them.
12. If I had to choose between an invisible illness or visible I would choose: visible. Maybe that makes me weak, but I have had enough of people telling me I'm just being difficult, or I'm making up my illnesses, or I'm a wuss and I should just tough it out. I would love for people to stop judging me and my decisions regarding my own health.
13. Regarding working and career: if I say I can't work today, then I can't work today. No amount of guilt-tripping or second-guessing will make me better. I have an autoimmune disease. Please don't tell me, "Nobody can be that sick," because yes, they can. I also need more down-time than most people to just recover from the normal work period, even when I'm not sick. I hate hearing, "So did you enjoy your day off?" No, I didn't enjoy my day off. I spent the day in bed wishing I were well enough to do one of a hundred things that needs done. I spent the day on the couch sleeping, because I haven't gotten enough sleep in a week. I spent the day crying, because the pain was so bad. I spent the day in the bathroom, and you don't even want to know what I did in there.
14. People would be surprised to know: how hard this is emotionally. I never expected to be judged the way I am today. I also never expected the level of frustration with food preparation, food choices, and eating out. People would also be surprised to know that gluten-free food is expensive. Six dollars for half a loaf of bread? That's cheap.
15. The hardest thing to accept about my new reality has been: finding out who cares enough to take my illness into consideration, or even to remember that I have one. Some people can be surprisingly uncaring.
16. Something I never thought I could do with my illness that I did was: eat at a restaurant. If I speak to the chef and the manager, if they understand the guidelines for non-contamination, if I go there enough so that they remember me, I might get to go to Applebee's once in a while without spending the next four days regretting it. Also, some restaurants have a gluten-free menu. It's usually severely limited, but hey.
17. The commercials about my illness: don't exist. That would be useful.
18. Something I really miss doing since I was diagnosed is: traveling. It's extremely hard to eat gluten-free while traveling.
19. It was really hard to have to give up: cheesecake, LOL. But seriously, it was really hard to give up on some friends and relatives who refused to understand.
20. A new hobby I have taken up since my diagnosis is: not cooking. You'd think that would be the easiest, but I've developed a love/hate relationship with food that makes me not even want to enter the kitchen. My husband does our cooking because I can't stand it.
21. If I could have one day of feeling normal again I would: take my dogs to the off-leash dog park and play frisbee.
22. My illness has taught me: to check every label, every ingredient, every time.
23. Want to know a secret? One thing people say that gets under my skin is: "oh, that really sucks." Yes, it does. Thanks for reminding me how much having Celiac Disease sucks, and that it is permanent. You can contemplate it for a moment and move on with your life. I must contemplate it forever.
24. But I love it when people: surprise me with gluten-free food they have made themselves. It really shows me that they care when they take the time and energy to make me something gluten-free. My grandma has started cooking gluten-free for everybody when I'm going to be there, and then doesn't tell anybody but me. :)
25. My favorite motto, scripture, quote that gets me through tough times is: "With God, all things are possible."
26. When someone is diagnosed I’d like to tell them: be prepared. Be prepared to feel better once you start eating gluten-free, but also be prepared to feel awful when someone you love tries to judge or guilt you on something you have no power over. One Easter dinner, my husband's grandmother told a table of 25 people that I was "making it up" and I was just "looking for attention." The only gluten-free thing at that meal was a plate of fresh strawberries.
27. Something that has surprised me about living with an illness is: people's reactions. They vary from completely understanding to accusing me out outright lying, and every shade in between. I actually thought everyone was as compassionate as I am about illness. I'm a glass is half full kind of person, and I was genuinely surprised at people's ignorance, and choosing to remain ignorant.
28. The nicest thing someone did for me when I wasn’t feeling well was: called in sick to work for me. I got the day off to rest and I didn't have to hear the judgement in my boss's voice.
29. I’m involved with Invisible Illness Week because: the only way to remedy ignorance is education.
30. The fact that you read this list makes me feel: hopeful that you will be compassionate and understanding now that you know. Hopeful that you won't continue your life as if you had never read this, and actually make an effort to change your way of thinking. Grateful that you even clicked over to read this.
Some websites with information on Celiac Disease:
Celiac.com
One website with extremely helpful information on what it feels like to have an invisible illness:
