For many of us with chronic health issues, specifically undiagnosed autoimmune and related disorders, we’ve spent many years having to be our own doctors. Many years knowing that something wasn’t quite right with our bodies, only for doctors to tell us we are the picture of health, or all of our lab results were ‘normal,’ so we just need to take these antidepressants and see a therapist. Now don’t get me wrong, I do think there is incredible value in mental health treatment and therapy. I am a rehabilitation counselor and a trained therapist after all, but the quickness of the medical community to dismiss legitimate health concerns and blame it on mental health makes my blood boil. The reliance on non-specific, and often inadequate lab work, while ignoring the full person is a sad place that our medical system has come to. I’ve had one too many doctors faces buried in my seemingly ‘normal lab results,’ telling me I’m young, fit, and the picture of health while ignoring the fact my body was covered in hives. Ignoring that my mouth was full of sores, ignoring that I couldn’t leave the house without knowing where all the closest bathrooms were, ignoring my debilitating fatigue & pain, pale skin, palpitations… I’d be here all day if I kept on going.
I’ve heard stories of other fighters seeing upwards of 15 doctors prior to an accurate diagnosis, many of them being told it’s just anxiety. I’m now convinced that anxiety is ‘the I have no clue but won’t admit to my limitations diagnosis.’ And this isn’t to diminish the reality of anxiety, because it is a very real condition, but it is certainly not the catch all for very real medical issues. I’m actually incredibly interested in emerging science behind anxiety, depression, and the role of systemic inflammation, but that’s a tangent for another time.
75% of autoimmune disorders in the US are battled by women, and the gender bias in women’s healthcare is notorious. A 2012 study showed just how prevalent gender bias is, especially when stress is present, and this study used heart attack symptoms as the presenting problem. It’s totally worth a read, but if you are anything like me, be prepared to be disgusted.
I’ve talked to women who know there is something wrong, are facing new symptoms, and don’t bring themselves to the doctor. Many will tell you they can’t take being dismissed another time or that they actually begin to doubt the validity of what they are experiencing. They start to believe that maybe it is just in their head after all. I’ve had these experiences too, my husband standing by terrified as I was curled up in the fetal position, screaming in severe abdomen pain. Or the time that we were eating dinner and I dropped my food, temporarily losing functioning on the right side of my body and couldn’t speak (BTW, if that happens GO TO THE ER). I had been diagnosed with the catch all fibromyalgia a few years ago, and quickly let myself fall into the trap of ‘oh it just must be the FMS and I have to just deal with it.’
Then something changed for me. In a tumultuous week of being told by my rheumatologist that I was the rare case that had been sick most of my life, that I just needed to accept that I was my illness, that conventional medicine had nothing left to offer me aside from prescription amphetamines, and another doctor ignoring my low B12 and worsening symptoms, I took charge. I wasn’t going to listen to it anymore. I wasn’t satisfied with fibromyalgia being used to explain everything, especially because my symptoms and FMS often didn’t line up. I kept replaying a friend of mine telling me how she didn’t want to be viewed as the ‘whiny crazy fibromyalgia patient’, but knew there was something seriously wrong with her and wanted to be better. I gave up on health insurance doctors, scoured the interwebs, and found an integrative specialist, an expensive one at that.
My first visit was incredible, and is deserving of a blog post all of its own. I finally found someone that was going to dig, someone that was going to look at me as an entire person and not just define my health by what a few values on a lab result showed. Someone that wanted me to be involved in my health care just as much as them. I was floored the first time I saw her. I had an entire list of possibilities to ask about, an entire list of testing that I thought might prove helpful, but I could have left the lists at home. I didn’t have to spout off all my crazy symptoms, the ones I never even told my previous doctors about, because I couldn’t bear their response. Before I could explain any of it, she asked if they were something I had experienced. She checked off an entire page of testing. I gave multiple vials of blood, saliva, and urine and then began the wait. The dreadful wait… As happy as I was to finally have the testing done that I knew I needed, I was terrified that the results would come back normal, just confirming years of doctors implying it was all in my head. I felt even more crazy for actually hoping the results weren’t normal. It’s not like I want to be sick, I just want to know WHY I am sick, and the thought of this doctor, someone who I truly see as my last hope, telling me I was normal based off of test results was terrifying.
Well, I didn’t have to worry about that after all. The nurse called me last week to notify me of some of the lab results that were a little alarming, and to double check if I was doing anything to address them. Among other things that I’m not going to write about yet, one of the major concerns was my celiac antibodies being high, despite nearly 3 years of a super strict GF diet. This is the one possibility I didn’t actually prepare for. I didn’t even think it could be a concern. Anyone who knows me, knows that I’m a bit excessive about keeping gluten out of my life – there is no possible way it’s been getting in my body. They also know that I’m just as excessive when it comes to research (Dr. Google and I are besties). Two weeks before the rest of my testing comes back and my follow up visit with the doctor, I was blindsided with results that I totally hadn’t prepared for. To say I was thrown was an understatement. I immediately wanted to research all the reasons why they could be high but playing Dr. Google is not something I need to be doing when trying to reduce stress.
I was talking to a colleague and friend about the results, and she kindly gave me a nice reframe. She told me that I spent the majority of my life having to be my own doctor, and while it was a super important aspect to my health journey thus far, it was time that I let go and let Dr. B take over. She reminded me that I had a very competent and educated doctor now, and that she was perfectly capable of taking over for Dr. Kristina. BAM. A perspective that I hadn’t even considered, and one that almost instantly took that pit out of my throat.
My friend was right, out of necessity, I had become my own doctor. It took me my entire adult life, over 10 doctors, and multiple specialists, before I found someone that I could hand the reigns over to. I tinkered with my diet, eliminated and reintroduced things in my environment, completely changed my lifestyle, fought for testing & care, and spent countless hours reading websites, books, and medical journals on a quest to figure out what was going on. I had become incredibly tuned into my own body, knew something was off, and was to the point that I had two options; give up and live a life trapped by my illness, or go on a quest to find someone who could do something about it. Now that I had found that person, I didn’t realize that I could, and needed, to step back and let them do some of the work for me.
I’m not going to lie and say I’m not having some detachment issues, but just hearing that reframe, that different perspective, was all I needed to start to pull myself away and stop obsessing about it. Am I still worried? Sure, but I’m not making myself sick researching all the possibilities. I’m going to wait until my follow up visit, let the doctor review everything with me, and work incredibly hard to look at myself as the whole person, the whole person that I’ve waited so long for a doctor to see.
It’s amazing how our brains work, and how much power perspective can play in a situation. I was so stuck in my fighter pattern, that I didn’t even see it. Just being made aware of another way to view it, was enough for me to step back and let it go. It was a powerful moment for me and one that I didn’t expect at all. Sometimes that’s all we need, a little nudge to view ourselves from a different angle.
Many of us with autoimmune issues and chronic illness, especially women facing gender bias, are fighters; we push through, we persevere, we keep on trucking. Most people with AI go multiple years before a diagnosis, sometimes decades; doing the research, asking for testing, challenging our medical system, and trying our best to keep living a life despite our symptoms. For many, this battle is happening while being disregarded by the medical community that we are turning to for help. There are an estimated 50 million American’s living with autoimmune disease, 75% of them women. Researchers have identified 80-100 different autoimmune conditions and suspect at least 40 additional diseases with an autoimmune component. That’s an insane amount of people who have felt or currently feel alone, who have little to no answers, who can’t explain to their family members & friends why they are the way they are. And far too many continue to doubt themselves, just stop fighting, and stop seeking answers.
So if this resonates with you, I encourage you to keep on going. Keep on fighting. Trust your body. Listen to it, and don’t give up. But when you get there, when you start to get those answers, don’t be afraid to let a little bit of it go, and hand over the reigns so that you can take on whatever is coming your way at 100%. You’d be surprised just how therapeutic that can be.