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! 🙂
You’re very kind to write what you did. But, in fairness, I’ve been basked HARD by plenty of people who are angry that I didn’t believe Fibromyalgia was a diagnosis that made sense for me. By far, most people have been encouraging. But, for sure not all. Thank you. 🙂
You didn’t say it didn’t exist or that others didn’t have it – you simply said it didn’t feel right for you. Nothing wrong with that! 🙂
Fibromyalgia is a difficult diagnosis to accept. The media and the general attitude of the world has long held that it’s nothing more than a “trashcan” diagnosis. I think that because of the way it’s been treated for so long most of us feel the same negative response when we are first diagnosed with it. Even after we learn more about it we keep searching for more answers, because there are none. It’s not like an auto-immune disorder where we can point at a cause “my body is attacking itself”. It’s just this ambiguous diagnosis that floats around frustrating anyone who is given it. I say all this as someone who carries that grand title. Someone who still has to question whether to even mention it to a new doctor, or to anyone (lest they judge me with that same attitude). I still look for other answers, the underlying causes of Fibromyalgia, and still carry that feeling that if I found an underlying cause I’d feel much better pulling that diagnosis out than waving the Fibro flag.
I completely agree with you! And anyone that doesn’t accept the diagnosis for themselves is welcome to not accept it – my point was that I felt the blanket statement that it is not real for anyone and everyone is not something I feel one person should be saying. I have a diagnosis (Sjogrens) and I still search daily for information and seek out ways to deal with and treat it. It is better to have an “accepted” diagnosis than not, but even with this diagnosis people (including many doctors) simply write it off as dry eyes and mouth and that’s it. Heck, I even did that myself for a while – surely this little dryness disease couldn’t be causing all these systemic wide problems!
I think any and every invisible chronic illness comes with its own unique set of challenges with regard to self, doctor and general public acceptance and understanding and I felt like we get so much of that from the outside that it was shocking to me to see someone within the community doing it to others as well!
I think it’s hardest at the beginning. I can get how someone who is newly diagnosed would be unaccepting of the diagnosis. They are still on the “outside” in many ways. I think especially with Fibro (because it has been viewed for so long by the media and too many doctors as fake in some way or another) that it’s understand that someone newly diagnosed would feel this way. Hopefully, over time and with some research she will realize that it is real and learn to accept it herself. Or, at least armed with some knowledge she can keep digging as an educated patient rather than fighting with nothing more than a reflex.
The bashing that bothers me the most is of the flavor of one person with a disorder/disease looking at others who have the same and saying that that person must not really have it because they can do X, Y, or Z. I see this most often with migraines & cluster headaches, but also with Fibromyalgia. It’s like if your symptoms aren’t exactly the same as mine (and as bad) then yours aren’t real.
BTW, this is a really great thought-provoking post (so much so that it is the inspiration for my Sunday post coming up).
Oh, yep, I also can’t stand the within-diagnosis downplaying others’ experiences!
Glad you found it thought-provoking! I’ll be waiting for your Sunday post! 🙂
Great post and I agree with everything you say. I just read a newspaper article this morning that talked about how biological proof has been found that ME exists. I couldn’t help but feel “I wish this was the case for Fibro”. I know that there has been steps towards figuring this out but to have something like that in the mainstream media would be such a big step. I struggled with my diagnosis for while, not because I felt it didn’t fit but because I was worried there was more too it. Now other illnesses have been ruled out I am more accepting. Many people are dismissive of it but I’m more thick skinned to that now I guess. Julie has a good point too. It upsets me when people feel like those who improve or are doing well don’t truly have Fibro. it shouldn’t be a competition and sometimes I feel like I shouldn’t share positive things in case I am judged for it.
I found your post through Julie’s and they are both thought provoking. I have to admit when I was first diagnosed and in the few years that followed, I wasn’t that sympathetic to some people with fibro. I accepted my diagnosis and I had pain but I really didn’t have flare-ups. I still did most everything I wanted and had a great job working in a veterinary clinic. When I would hear someone with fibro go on about the pain and say they couldn’t even get out of bed, I thought they were exaggerating. I am soooo sorry, I even thought that. Of course I never came out and said it to anyone, that would be rude, but I thought it. It wasn’t until 5 years after I was diagnosed, that fibro showed me how bad it could get and I ended up quiting my job. So, I guess judgement can go both ways and either way is wrong.
I think that lazy doctors use Fibromyalgia as a dumping ground for everything that they don’t understand and/or can’t figure out! My first rheumatologist failed to accurately diagnose me but hung the Fibromyalgia and Chronic Fatigue Syndrome tag around my neck. I have neither. Not only does it delay a proper diagnosis, it’s a huge disservice to the people who actually DO have these disorders and adds to public opinion that these diseases are “made-up”.