March is autoimmune awareness month. In honor of it I’m posting infographics on my facebook and twitter sharing various autoimmune disease facts throughout the month.
But a facebook poll from a fellow Sjogren’s patient got me thinking – and it lead me to a realization of how many types of awareness need increasing!
Of course there’s the easy one to identify – general public awareness. Only 15% of Americans can name an autoimmune disease. Increased public awareness would help reduce time people suffer before seeking help and reduce time they are willing to put up with non-helping medical professionals that brush off symptoms (because the patient would be aware that it’s real and important and be less likely to “let it go”). It would also help with general compassion and empathy of friends, family and co-workers for those suffering.
But the facebook poll got me thinking about awareness in a less obvious way. The question (asked by Christine of “Thoughts and Ramblings on Life, Love and Health” blog/facebook page and the book “Tales from the Dry Side“) was:
“If you have Sjögren’s or another autoimmune illness, and you could pick just ONE symptom to get rid of forever, which one would it be?”
The overwhelming response was “Fatigue.” I realize this is a highly un-scientific poll, but when 26 people respond with the same answer and only 9 others respond with something else (there was a mixture of other answers including joint pain, dry eyes, dry mouth, Raynould’s, etc.) – that made me start to think about awareness in a different way.
If you follow my blog then you know the story of how “Dr. C”, the rheumatologist at KU Med laughed off my fatigue, saying “If I had 8 hours of sleep a night I’d feel great” as if it was clearly my fault that I didn’t feel great with that much sleep.
When I tried to explain how draining and life-altering this fatigue was and that I was worried about the ability to continue to work full-time to support my family he said that wasn’t enough of a reason to warrant any treatments with immunosuppresents (the “killing an ant with a sledgehammer” statement that I wrote about previously).
And he wasn’t the only one that wrote off my fatigue. Fatigue was the first symptom I went to my primary care doctor with in early 2008 – she sent me to a rheumatologist with the fatigue and elevated proteins in my blood work. The rheumatologist (“Dr. A”) wrote me off as just being tired from my lifestyle and sent me on my way. “Dr. B” also brushed off my complaints of being fatigued.
No matter how much I tried to impress upon these doctors that it was real and it was definitely intrusive in my life and my ability to function as a person, wife, mother, friend, employee, etc., they just seemed to move past it and act like it wasn’t important – which made me question if it was important (at least until it slammed into me the next time, likely only a day or so later, and I would realize it was absolutely important).
Yet here it is as the ONE symptom we would get rid of if we could. One response to Christine’s facebook poll said exactly what I feel – if I didn’t have to deal with this crushing fatigue then I could deal with the other “crap.” The pain, the fine motor control, the brain fog, the dry eyes and dry mouth – those things could all be handled and accommodated and dealt with if I just didn’t have this all-encompassing, bone-crushing fatigue that is like carrying lead weights around all the time.
So how did this lead to this post about awareness? Because these doctors (the very ones that “specialize” in these diseases – the ones we’re sent to when we have an autoimmune disease – all of which include fatigue as a symptom) are clearly not aware of the full impact that fatigue has in our lives. I’ve written before about how un-empathetic some doctors can be (here and here, for example), but it is still amazing to me how little many of them seem to know about how these diseases truly impact our LIFE as opposed to just our health.
Clearly there needs to be increased awareness with medical professionals about the implications of chronic, invisible, fatigue-inducing diseases have for our lives. But how can we get there? Where can they get these awareness-gaining experiences? How can we get them to gain this awareness? (Notice I don’t say “understand” as I truly don’t think people can “understand” what it’s like without living it, but awareness and empathy are things I think we can impact).
Most of them aren’t listening to individual patients to gain the awareness – I’m absolutely certain I had no impact on Dr. C’s awareness as he shook his head laughing at the silly woman that said she felt fatigued with 8-10 hours per night of sleep plus naps most days. So clearly we can’t rely on their one-on-one experiences with their patients to give them this awareness.
The ones that are on social media interacting with the patients are likely the ones that “get it” already.
Books like the one I wrote (a personal account of the impact this disease and my journey with it have had on my life) can hope to increase awareness and empathy, but how many of the doctors are actually going to pick one up and read it?
Where can we patients introduce ourselves into the professional development of medical professionals to try to increase awareness – med schools, conferences, advocacy groups? How do we gain access to those places? How do we convince them that we’re credible and that it MATTERS to us that they have this awareness?
There are some who “get it”. I am lucky enough to have a rheumy who does. Perhaps one path is to get those who “get it” to advocate to others in their profession.
The other thing that I do on an individual basis is to try to give examples . “I am so tired that I don’t feel safe driving some times”. “I am so tired that I am unable to make supper, though I use to cook all the time.” “I am so tired that taking a half hour walk means I have to take a nap.” Sometimes that makes it more concrete.
But one rheumy kept insisting that if I just exercised more I’d feel better. I tried to explain that if I exercised gently for a half hour (or did PT), I then spent two days in bed recovering, but she didn’t want to hear that.
Well, I just make sure that the University of Washington, who I know send doctors out the door that don’t know their ass from a tea kettle, get their name in my titles. Screw, the way we protect doctors by using their stupid initials, name them damn it! That gets their attention, especially when they are trying to pass themselves off of rheumatologists that should have been taught exactly what inflammation does.