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What Living With A Debilitating (Yet Invisible) Condition Has Taught Me

I was always perfectly healthy as a child. Not even so much as a broken bone on the playground. Sure, every now and then I’d eat something too quickly or something that didn’t agree with me and be crippled over in pain on the couch the rest of the day, but I didn’t think anything of it. My daily life carried on all the same. Nothing changed, I was happy and worry-free. Then college hit. I was anxious- a lil bit nervous about leaving home and leaving my friends and starting new- so I thought my nerves were causing my sudden stomach problems. Then one day I woke up and realized I couldn’t remember a time when I didn’t have to immediately find a bathroom everywhere I went, when I wasn’t in crippling pain, bloated or feeling like someone had taken a match and lit my insides on fire. Somehow words like “Crohn’s” and “Colitis” and “SIBO” and “FODMAP” found their way into my daily vocabulary, alongside a feeling of never being 100% comfortable leaving the house. People ask about my symptoms and I watch a look of horror spread over their face as they seem almost offended that I would dare to say such terrible things. Nobody full seems to understand what a day in my shoes is like, and I’m tired of not speaking out because my disease makes others uncomfortable… the unfairness of that is overwhelming. I hope that one day it becomes just as acceptable to speak about intestinal diseases as any other, and that those who are going through much the same thing as me feel they no longer have to be ashamed or embarrassed, but instead can feel comfortable to speak out too. Until that day, though, I plan to keep fighting tooth and nail to get people to see that not every illness can be seen, and we should be more understanding of this. I’ve learned so much about myself and about how accommodating (or not) people will be for you in a tough situation, but mainly I’ve learned-

  1. People are going through way more than meets the eye. Give everyone the benefit of the doubt. Sometimes the things you can’t see are just as bad, if not worse, as the things you can. If you saw someone hobbling along on the street with a broken leg, you’d feel bad for them right? Maybe offer to help hold open the door? How is that any different from illnesses that are hidden. I suffer from IBD and Celiac, but the same holds true for mental illness, too.

  2. It’s okay talk about uncomfortable things. Just because it makes other people uncomfortable doesn’t mean you have to stop. So many times I want to scream because people start squirming when I talk about my symptoms. Stop. Imagine actually living with these symptoms. If people were more understanding, it wouldn’t be nearly as hard for people to live with this disease. If you never talk about touchy subjects, they will never become un-touchy (does that even make sense?) Idk. All I know is that breast cancer used to be taboo because it involved breasts, and now there’s multimillion dollar corporations set up around finding a cure for it, so anything is possible.

  3. No one disease is worse than the other. Living with anything that makes your day-to-day a little (or a lot) more difficult is terrible, and I wouldn’t wish it on anyone. While the doctors have been trying to figure out what is wrong with me, they’ve run through a bunch of different ideas. I’ve noticed that if I mention I might have Colitis or Crohn’s, people become extremely sympathetic. But if I mention that I’ve been diagnosed with Celiac and have to follow a gluten-free diet, people scoff at me. “Do you reallllly have an allergy to gluten?” they ask me. Or I hear quite a bit, “gluten-free is just a fad” or “it won’t hurt you to just cheat a little, will it?” Trust me, I don’t WANT to never eat a bagel or deep dish pizza again. Carbs are and forever will be my fav. If you think I’m doing this on purpose you’re crazy.

  4. People will be judgmental. This one goes hand in hand with the last. Please, if we’re out to eat, if I ask for a gluten-free menu, don’t roll your eyes. It it killing me to sit here and watch you eat your free, warm bread. I’m not being stuck up. I’m not being a health snob, all-organic, healthy living freak. If I eat gluten, I will get sick. I will feel terrible for the rest of the night, and probably into the next day. Making fun of me for having to avoid cross-contamination will not help solve my problem, or impact you eating your meal in any way.

  5. If someone tells you they’re not feeling well, take them seriously. Self- explanatory. There are times when I all of a sudden know I’m going to be sick, and need to find someplace to do that STAT. If someone says they’re not doing so hot, just help them!

  6. Loss is normal and it’s okay to be upset.  It sounds strange, but it’s true. Gone are the days of breakfast being my favorite meal. French toast, pancakes, toast, cinnamon buns, most cereals and oatmeal? Out of the question. Going out for a beer with friends? GONE. (yes, even beer has gluten). Not to mention LOSS OF MONEY. Someone explain to me why everything Gfree is incredibly marked up in price. Yes, I would love to pay $2.00 more to have the same thing everyone else is having just so I can have a nasty tasting gluten free bun on my burger. I feel like this is discrimination maybe? ????

  7. There is no quick fix. Healing my intestines is a painstaking process that requires eating right A concept I had not fully grasped until recently. (Oops). Even cheating a little bit- having a granola bar that was processed in the same facility as wheat- can set me back so far that I have to start all over again. It sucks, but it’s way worth it in the long run to just stick to the diet and feel so much better.

As I sit here writing this after another disappointing doctor’s appointment this morning, being jabbed with more needles and having more procedures scheduled, I’m frustrated. I’m mad that this has to happen to me and upset that I can’t live a normal life. I’m stressed that I can’t go out in public without being worried about if I might get sick, and I’m wondering if I will ever feel healthy again. But until the day comes that I have more answers, I want everyone to know that it’s okay to speak out about your condition. Who gives a shit what anybody else thinks- give yourself the power to take a stand and make a change, and maybe you’ll encourage someone else somewhere to do the same.

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