From the American Autoimmune Related Diseases Association, “According to a 2001 survey by the Autoimmune Diseases Association, over 45 percent of patients with autoimmune diseases have been labeled chronic complainers in the earliest stages of their illness. This can be devastating to a young woman [75% of us AIers are women in our childbearing years] who may then begin to question her sanity as she tries desperately to find out what is wrong. Tragically, many of these patients suffer significant damage to their organs in the meantime and end up carrying this health burden with them for the rest of their lives because of the delay in diagnosis.“
What happens if you are sick and nobody understands? I included the above quote from AARDA, because I wanted to show that the “nobody understands” aspect of autoimmunity is a very real, serious part of the battle . . . one that has been quantified. In the very beginning of my journey I, myself, was not sure if I was “just being whiny.” My symptoms came and went, they were strange and nebulous. It was hard to tell my closest confidants what was happening, let alone my doctors.
I remember the first time I had the sensation that the “chronic complainer” label was being applied to me in a medical office. My doctor had diagnosed my skin condition just weeks earlier and I was in for a check-up to talk about the steroid medication I was using. I felt very nervous about the side-effects of the steroid, plus I didn’t feel that it was helping much. “I’m still in alot of pain.” He told me that he had seen people with much worse conditions and that I should “try harder to focus on the positives” in my life. It was almost like I could literally feel him sticking a label across my forehead that read, “Chronic Complainer.”
It got much worse after that visit. As the years passed new symptoms appeared, how frequently I was experiencing them & how long they lasted increased. They became less & less nebulous, at least to me. I could definitely tell that something was going wrong in my body. I tried desperately to explain to my doctors, but I could usually tell within one or two visits if they were actually going to take me seriously. My self-image became more & more diminished, as my anxiety soared dramatically.
This past year, after my third autoimmune diagnosis (Celiac), I began to request my complete medical records from my various doctors. There it was . . . in chart after chart . . . “patient has history of anxiety.” It wasn’t a notation taken with all my other medical history, it was a label placed at the very beginning meant to diminish every important piece of information I gave after that point. It was true. My anxiety was sky high, but it was due to autoimmunity itself, coupled with the horrible treatment I got from physician after physician. Checkups were more like trials where I had to somehow prove beyond a shadow of a doubt that I was actually ill to a powerful & highly skeptical judge & jury, aka my supposedly caring doctor.
It wasn’t just the doctors though. Recently, I had a really open, frank talk with my husband about what he thought when I was at my worst, prior to my Celiac diagnosis. I am so lucky, because he has been a very kind, supportive partner, but every moment of the journey was not rainbows & unicorns. He told me that he never doubted me. He could tell something was seriously wrong & didn’t see me as the sort of person who would needlessly make a mountain out of a mole hill. He was struggling though to understand, to have a label that would make a way forward obvious. “I was so frustrated. I wanted to help you, but felt completely unable to do anything. I was scared. All of that came out in a way that seemed like anger at you.”
I had the same sort of conversation with one of my sisters, because I was curious how she had felt as I got more & more ill. She said that she was worried & then after multiple, intense medical evacuations in Africa she was scared. She told me that she started to prepare herself for the possibility that it was cancer & I was dying. Again, I was blessed to have a sister that cared so deeply, but it was not best friend/tiara parties all the time. She told me that during my sickest period she had trouble talking to me & couldn’t be on the phone with me for very long. “It was awful to see someone I love that ill, but it was also very intense & you couldn’t get any answers. It was tough to cope with that all the time.”
Autoimmunity is not well researched & therefore is not well understood. For those with autoimmune diseases, that lack of understanding trickles all the way down into our daily interactions, even outside medical offices, & into our very intimate relationships. If the disease is not clear cut, we don’t have much patience for it in our society. I have an enormous support network, but it was still stretched thin. Ultimately, I believe that the autoimmune path is one walked mostly alone.
Being alone, does not have to mean isolated though. Be forward about your journey, even if you don’t have a diagnosis yet. There are lots of us out here with AI & you might find your answer in a friend you had no idea was ill. Keep on looking for the right doctors. Do whatever it takes to get them on board with you. Once you get a diagnosis, let yourself experience the normal grief process. It often takes years to get our answers & the damage done in delay is very real. It is okay to grieve that. Actively look for ways to move forward though. God gave you this burden for a reason. Endeavor to discover that reason, even if nobody else understands.