Where Have I Been? Thinking about Chronic Illness Stigma...
So...what happened? Last time I blogged was about three weeks ago and I told you I was going to ask my doctor about the FM test. Well, I didn't, and I'm sorry. I will, I promise, but other immediate issues needed to be discussed and as anyone who's familiar with the medical community knows, you only get so much time to talk and so many topics to address during any one visit. I'm fine by the way, healthy as ever, and intend to stay that way.
However, something else happened while I was "away" from the blog and it's time to address it. Well, two things happened, actually.
1. I started job hunting.
2. I went to a new massage therapist. (I also went kayaking, as seen in the cover photo for this post).
Job Hunting as an Advocate
Here's where the stigma and self-questioning started. I looked at my online presence and thought, "I already have a book about recovering from an eating disorder, and I have already shared a lot with the internet regarding chronic depression...do I really need to tell the world about my fibromyalgia diagnosis on my personal website, too? It's not like I haven't talked about it before on The Mighty, but on my personal and professional website? I got scared. I got scared that in this competitive market this could be "the" thing that stands in the way of me securing another position. I got scared people would make assumptions about my abilities based upon my diagnoses, despite all of my previous achievements, both academic and career-wise. I got scared of implicit bias.
So what did I do?
I unpublished my blog and took a short-lived breath of relief. Surely this will help my prospects! After all, job searching during a pandemic and in the midst of a divorce is kind of enough to deal with, no? The problem is, unpublishing my blog does not undo my diagnosis or erase my reality as someone living with chronic illness. In fact, it takes away a critical part of what makes me an amazing candidate - my resilience to endure, despite. Sorry it took a while to get my courage back, but here we are.
A Massage Therapist Suggests I Have Lyme Disease
Remember how I told you I was going to try myofascial release treatments to help manage my symptoms of fibromyalgia?
Well, I did.
Upon checking in, I was told my intake form responses were complex and many symptoms pointed to Lyme disease. Those same symptoms are, of course, symptoms of fibromyalgia for which I do have a diagnosis from a rheumatologist.
I responded with interest as I had actually just written an article on ticks and Lyme disease for the number one digital health publisher, Healthline.
A few marks on my back were apparently very characteristic of something I had never heard of, but the professional was well-versed in, bartonellosis infection. When asking what the marks meant, I was told the bacteria was eating through my skin.
You can imagine what this did to my anxiety and my research-focused brain. That day, rather than reflecting on the benefits of the treatment with you all, I entered a journey through the depths of the internet where I found everything under the sun that could be used to confirm what this person was thinking.
Then, I came across the outlet Lyme Science and spent time thoroughly reading through their catalog of information, including an article showing that the images on Google of people with an infection from bartonella are nothing more than people with stretch marks...
I also found cautionary statements from doctors who expressed concern about the misinformation about Lyme spreading around. Apparently, you see, bartonella is not a coinfection of Lyme and you cannot actually get it from ticks, unlike what I was led to believe in my appointment.. . About LymeScience
When discussing my findings with the massage therapist, I was told there are doctors on both sides who are reputable and as a medical research and writer, she expected more from my findings.
The problem here is that both Lyme disease and fibromyalgia are complex illnesses with many overlapping symptoms. There are some doctors who will tell you fibromyalgia is nothing more than "mold toxicity," and others who will say it does not exist at all.
The world of internet research can be a rough place to get a straight answer one way or another, and there is always someone ready to confirm a bias or prove a perspective or give confidence where doubt should remain... but we must always remember it matters where your information comes from. It matters which media you follow and what doctors you listen to. It can ultimately come down to differences in belief when you have different medical professionals arguing on both sides, and this was what I needed to get myself going on this blog again.
The Bottom Line
I'm back. I'm working on my internalized stigma. I'm not giving up on the job search. I have a new sense of purpose to provide you with accurate info about chronic illness because it matters. You matter.
Stay tuned for more. -MP