If you’ve read my About page, you know that the reason I want to go into nutrition is that I have three autoimmune diseases. I was diagnosed with these, along with asthma, in 2003. At the time, I really had no idea what living with autoimmune issues was going to be like. I was just glad to be on medications that made me feel better. One of these diseases is celiac disease, which, if you don’t know, causes your body to attack your upper intestines (the duodenum, which, yes, is really fun to say) whenever you eat gluten. The only treatment is to completely eliminate gluten from your diet; otherwise your intestines will become so destroyed that they won’t be able to function or send nutrients to the rest of your body, and you will slowly be malnourished to death (if you don’t get cancer first). So no helpful medication there – just a massive diet change.
During this period when I was first diagnosed, this was mostly what consumed me. I didn’t really think about being “sick,” as my other illnesses didn’t impact my day-to-day life. And I didn’t feel that celiac made me “sick” either, since I didn’t have symptoms unless I cheated on the GF diet.
Until the fall of 2013. Cue ominous music.
At this time, I put myself into several ridiculously stressful situations. And around the middle of November, I was struck with what I thought was the worst flu of the century – I even got tested for mono. No dice. All the tests came back negative, but I was sleeping 10 hours each night and napping for 4 hours every afternoon, because I couldn’t make it through the day otherwise. I was exhausted when I was awake, with body aches, a mild fever, and nausea. My throat was horse (I kept joking that I sounded like Barbara Stanwyk). I thought maybe I had the plague.
What I really had was an autoimmune flare-up.
When I finally saw a new endocrinologist who told me what was going on, I was floored. I thought, “But I’m not really that sick. Not sick enough to cause symptoms like this out of the blue. I’m like a normal person, really. That can’t be what’s wrong.”
But it was. Apparently autoimmune diseases go through periods of remission and periods of flares.
The symptoms continued to fade in and out in the beginning of 2014. I’d have days where I felt good, days where I felt okay, and days where I felt sick again. For the first time since I’d been diagnosed with all my issues, I was forced to admit to myself that I was sick, and that I needed to make changes to my lifestyle. If I needed to nap in the afternoon, if I didn’t have the energy to go out with my friends, it didn’t mean I was a lazy, pathetic loser. It didn’t mean I was a bad friend or a bad person. It just meant that I was living with chronic illness, and I needed to make allowances for myself.
For someone who is a perfectionist, this has been incredibly depressing. I’m constantly berating myself for not being able to live like “normal people.”
This becomes particularly obvious to me during the holiday season. This time of year is a hotbed of stress. Since in 2013 I was now dealing with these illnesses as well as the depression that came along with them, it was really a very difficult time.
Why are the holidays such a trigger?
Well, for me and other celiacs, there’s the increased risk of being accidentally glutened. When I’m at other people’s houses, I don’t know if they were careful to avoid cross contamination, so even though the mashed potatoes should be fine, if the hostess used the same spoon to stir them as she did the stuffing, I’m screwed. This causes a ton of anxiety and stress for me, which in turn makes me flare up and can actually make my celiac symptoms worse, causing my duodenum to be even more sensitive than usual (even a spoon laid down on a counter with crumbs on it can make me sick at this point).
Additionally, when I’m feeling bad, I can’t make it to some social engagements. I’ve had to cancel, last minute, on some things. This makes me feel like a lousy friend, and I can’t help thinking that people are mad at me because of it. Of course my close friends and immediate family understand; but people outside my immediate circle don’t get that.
I had to miss a work friend’s wedding last November because I was sick. I’ve tried to text her since, but she hasn’t answered me. I have a feeling that bridge has been burned, especially since she’d spent some time figuring out what was gluten-free on the menu so that I would know what was safe for me to eat. And this makes me feel like a bad person. Why couldn’t I just go to the wedding? Why couldn’t I suck it up and just be normal for once? Well, because I’m not. I’m sick. And even though, at that point, it had been over a year since the flare started, I was still having a really hard time dealing with that.
These worries, stresses, and bad feelings lead to a cycle of anxiety over what I’ve done wrong and depression over the fact that I can’t change anything.
And then there’s the possibly well-meaning, possibly oblivious relatives who haven’t seen you since last year and are full of “helpful” advice about diets, medications, exercises, TV shows, websites, and supplements that they’ve spent 30 seconds thinking about but imagine will save you. Like you haven’t spent every free minute talking to doctors and researching and didn’t try that diet/medication/exercise/TV show/website/supplement five years ago.
I was talking about all this with a friend of mine who unexpectedly had some health problems this past year as well, and she said she felt like people blamed her for what happened to her, like she had done something wrong to cause it. Like she is a bad person, immoral or sinful in some way. And she said she felt like they were right on some level; like she must be defective, and she hadn’t worked hard enough to find a way to fix herself.
This is the worst feeling in the world, and I have definitely been there. What the judgers, and what our inner critics, don’tunderstand is that we would do anything to fix our bodies and our minds. Just because we’re sitting around watching Gilmore Girls on Netflix instead of going out, just because we’re laying around in bed, doesn’t mean we’re enjoying it. We’re trapped. We’re trapped in these bodies that don’t do what they’re supposed to do, and we would make any deal, any trade in the world, that would make it stop. But it never will. And living with that knowledge is its own kind of desperation and pain, aside from any other symptoms, that we have to deal with.
To everyone out there who struggles with chronic illness, whether you’ve just been diagnosed or are thirty years in, I hope you have a happy and healthy holiday season. And if you’re not healthy right now, then I hope you are kind to yourself during this stressful time. Do what you need to do and don’t feel badly about it. You deserve that kindness.