In the past year and a half that I’ve been writing this blog I’ve slowly been becoming more involved in the chronic illness social community – the Sjogrensworld.com blog, following twitter and facebook people that are advocating, struggling or otherwise talking about life with chronic illness (most of them with autoimmune diseases or fibromyalgia) and so on.
All in all I’ve found it to be a very open, supportive group of people. Most are willing to share their experiences, validate, commiserate, provide support, hope, and often a few laughs with their posts as well.
It’s by far a very non-judgmental group of people. I think most of us realize that none of us fit a mold – we all experience our diseases and symptoms differently – it’s part of the insidious nature of autoimmune and other chronic invisible illnesses! Most of us spent years trying to get a correct diagnosis and have had at least 1 (often many more) doctors brush off symptoms or say we don’t have something because we don’t fit the exact textbook definition.
I think that’s why I was so gobsmacked when I saw a post today on a facebook page for my local Sjogren’s Syndrome Support Group. I don’t know the woman that posted it and I have no idea if others feel the same way as I do, so please remember that these are my thoughts and opinions and that alone!
The post gave a rundown of all her symptoms and how long she’d been experiencing them (many, many years). I was with her and following along. Then came this (a DIRECT quote!):
Doctor sent me to a rheumatologist, he diagnosed me with Fibromyalgia. Fibromyalgia?(a made up syndrome just to make a patient think they finally have a diagnosis).
Like I said, I was totally and completely gobsmacked. I’m pretty sure my jaw literally dropped open. She goes on to say she believes her illness is due to mold and is looking for a doctor to test her for mycotoxins.
Now compare this to an article I read just yesterday (what are the odds of having these two things to compare with each other only a day apart…good thing since my brain fog would likely get in the way if they were farther apart!). It’s called “It’s Not Fibromyalgia” (by Sherri Bailey) and it’s a well-written account of one woman’s journey to finding out her issues are due to mycotoxins. However, instead of bashing another disease she simply says that she knew that diagnosis didn’t fit her. She knew her body and knew that Fibromyalgia wasn’t what was going on.
The first is judgmental, offensive and down-right rude while the second is an example of the many times when we chronic illness patients were told one thing was going on with us and it just didn’t ring true so we keep searching until something made sense. These are two completely different ways of sharing.
I get the frustration of being mis-diagnosed. I was mis-diagnosed for 2 years with RA and underwent 7 different treatment regiments, two of which I was allergic to and three of which were wildly expensive. I get being weary of diagnosis and I get questioning them. I’m one that is actively advocating for double-checking your medical records and being an e-patient (engaged, empowered patient). I’ve even posted my own “I told you so” story about knowing something despite what the doctors say. I firmly believe that no one knows our body and our symptoms like we do and sometimes you need to question something that you know just doesn’t seem to fit.
But that is never, ever a reason to say that another diagnosis doesn’t exist or that it is made up or that it is used simply to appease people complaining of symptoms.
We get enough of that crap from so many doctors and so many people that don’t know better (like all the people that say those suffering with Celiac’s disease are just avoiding gluten because it’s a fad right now!) – people that are ignorant of what it’s like to live with these invisible chronic diseases. I’m not calling them stupid people, mind you – but ignorant. They don’t know any better where this topic is concerned.
But to hear someone that suffers along with us use that kind of thinking (someone that is not ignorant of the trials of invisible illness) and to post it on a support page for people with a disease that until recently takes an average of 5 years to diagnose (the Sjogren’s Syndrome Foundation is making headway on that 5+ year rate of diagnosis!) is downright infuriating.
If you don’t feel a diagnosis fits you, fine. You’re more than welcome, and in fact I’d say encouraged, to share about it so others may learn from your story and may look at their own situation differently. In fact, I did it just this week when I felt the major depressive disorder diagnosis did not fit me.
However that does not give you the right to say that other people’s diagnosis is made-up. I didn’t bash depression or dismiss it, in fact I specifically said that it’s important it should brought to the light, discussed and acknowledged more than it is. I just simply don’t feel like it accurately describes me right now.
So bravo to people like Sherri Bailey (@SherBailey) and others like her that can talk about finding their way to a correct diagnosis without bashing or marginalizing others’ journeys and no link to the person that was unable to do that! 🙂