This post is kind of emotionally heavy, and truthfully, it’s basically a novel. I commend you if you manage to read through the whole thing. Honestly, it’s something I’ve never written too much about, other than a vague mention here or there. The most I’ve ever said about it was in this post, related to why we started using more “green” products around the house.
I mentioned in my post earlier this week that my endocrinologist thinks I may have a thyroid autoimmune disease. This basically means I have antibodies against my thyroid. Currently, my thyroid appears to be compensating, so I don’t need to take any medicine, but that could change. I read a really interesting article on The New Yorker about autoimmune diseases, and there were so many sentences in that article I could have written.
Particularly this: One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be.
I was diagnosed with hypothyroidism when I was 15. It’s very rare to get that diagnosis at such a young age. I started getting sick frequently during my senior year of high school, and it only got worse as I started college. College was really hard for me. I felt very isolated. No one really understood me or what I was going through. I was “the sick girl” and no one wanted to be friends with her. It was exhausting for me, and I’m sure it was exhausting to be around me, frankly.
I would sleep for 16 hours a day because no matter what I was constantly fatigued. I gained 20 pounds in less than 3 months. No one could explain how or why–maybe the constant steroids I had to take to control my unidentified illnesses–chronic sinus infections, joint pain, brain fog, high fevers, unexplained swollen lymph nodes all over my body, constant fatigue, and general malaise all the time. I was sick of feeling fat, so I stopped eating anything processed and followed a strict diet. I lost all the weight and was finally feeling somewhat better. But, I continued to get sick. I would have a week where I felt sort of OK after taking steroids for a few weeks, and then I’d be back at the doctor trying to figure out what was wrong with me. There was usually no diagnosis other than some sort of infection no one could find the source of.
During my second year of college, I nearly went into anaphylactic shock from eating whole wheat crackers in the library one day while I was studying. I was promptly tested for food allergies, and we found out I was allergic to wheat, soy, melon, stone fruits, and an assortment of other foods. I also started getting allergy shots to deal with my environmental allergies–three shots twice a week.
After I started eating gluten free, I stopped having chronic sinus infections. That took care of some of the discomfort and general ill feelings, but it didn’t resolve them all. My weight plummeted, and I lost 10 pounds in less than 2 months. My doctor ran test after test, and he couldn’t find anything. One day, he told me to stop exercising and eat cookies because he was at a loss for what other advice to give me. Eventually me weight issue resolved itself, but without explanation.
The author of the article talked about losing her sense of self: It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. It was that I no longer had the sense that I was a distinct person.
I don’t know how to explain how I felt in college. I already said isolated because truly no one understood what I was going through, but I sort of lost my will to live. I cared enough to continue to do well enough in my classes to not destroy any hopes of a future, but I wasn’t really sure a future was worth it. I felt like I was dying, and I didn’t really care. I was never suicidal though. I became very apathetic. My doctor put me on antidepressants to help me cope with all the medical issues I was going through, which made me numb to everything. There are about 6 months of college that I don’t remember. I mean, sure I could vaguely tell you some things, but there are entire months sort of just missing. I forgot I went on a trip to Texas during that time. Do you forget flying 3 states away? I was just going through the motions. The trip to Germany my family took during that time? A giant fog. I remember bits and pieces. It’s truly disappointing. I have more vivid memories of the times that came after I stopped the drugs.
I then had a CT with contrast dye to determine the cause of my night sweats, rapid weight lost and swollen glands. The lymph nodes in my neck were so swollen, you could easily see them when looking at me straight on. They were about the size of grapes. My doctor was concerned I had lymphoma based on my symptoms, but the CT only found a thyroid cyst.
I was referred to an infectious disease specialist, who thought I had HIV (despite having ZERO risk factors). To quote him, “I think you just have HIV.” Because that’s something you’d say “just have” about. No. Needless to say, I never went back to him after that appointment, but nothing was found in all of his tests. He ran an ANA test to see if I had any autoimmune diseases, but nothing showed up.
I was then referred to Mayo Clinic in Florida as a last resort. At Mayo clinic, they ran an assortment of tests, including a repeat of the ANA. Again, no autoimmune disorders found. They did, however, decide that the inhaled cortisone steroid inhaler I was using was triple the dose appropriate for someone my size. I had to wean myself from the inhaler over the course of the next three months. The doctor there also decided based on my lung capacity that he didn’t think I even had asthma. Once I stopped the inhaler, I was able to breath fine during exercise and didn’t need any inhaler. I also had a thyroid biopsy done on the cyst, which fortunately revealed it was benign.
Slowly as time passed after college I stopped getting sick as frequently. I was able to function like a normal person–though I still didn’t have answers. Last year, when I was pregnant, a routine thyroid panel revealed that I was now hyperthyroid instead of hypothyroid. I stopped my medication I’d been on since I was 15–as I wasn’t gaining any weight during my pregnancy–and that seemed to do the trick. My levels evened out, I started to gain weight and I felt fine. I had my routine thyroid screen this January after meeting with an endocrinologist here. Based on my history, he wanted to run an additional test for thyroid antibodies. So, now I may have more answers to some of the “why” in terms of all my unexplained illnesses.
Sometimes, I’m convinced that my mostly organic food, limited processed food and all “green” cleaners play a huge part in feeling better. The environment I live in is “cleaner” and there’s less to impede my immune system from doing its job. Truthfully, knowing that exercise and a healthy diet were in some way related to me not feeling like I was dying motivates me to continue to take care of myself. I still have days where I feel about 60%. My joints hurt, I’m exhausted and I just feel “off.” But, I feel like I conquered the worst of it. Maybe it’s just a changed perception of reality and accepting that I’ll never be 100% again, but sometimes I think I’m “better.” Since I never had the thyroid antibody test done before this year, there’s no data to compare it to. Perhaps this has always been what was making me sick, but no one identified it.
Needless to say, I’ve been to a few doctors appointments. It was hard to read the article, because in so many ways, I felt as though I’d written parts of it. While I wasn’t dealing with a terminal illness, the chronic illness was hard for me. Without answers, I felt truly hopeless. It’s always hard for me when people talk fondly of college because I spent college in survival mode. When I finished college at 20, I’d been through so much. I didn’t have many positive associations with college, and I was really just ready to close that chapter of my life. I keep in touch with one friend from college. The “friends” that I had abandoned me one-by-one as I got sicker and sicker. It was hard to feel alone and misunderstood. Truthfully, I know it was hard to be friends with me because I was constantly so sick and run down, and it made college harder for me. It’s something I look back on with disappointment. But, I’m so thankful with where life has taken me.