Today, I’m kind of building off a few prompts and sharing the issues that I have had in some support groups that have either led me to leave them or to correct serious misinformations.
For me, the best way to deal with any negative feedback or incorrect information is to be incredibly educated about your illness – know the stats, symptoms, medications, etc.
It’s a very interesting to study. For the most part, I think that we all expect people who are outsiders to not understand our illness or to be promoting misconceptions or miracle cures. Sadly, I think the majority of wrong information actually comes from us ourselves.
In the last few months, I have left a lot of support groups because there is A) a ton of freaking drama and I just can’t handle it, and B) a lot of idiots. The two may be related.
There are a lot of people joining support groups lately to spout junk about natural remedies, cures, and lies they sell themselves to deal with their disease. The latest one I ran into was a guy assuring someone that she would totally go through remission and shouldn’t really worry about her Still’s right now.
Turns out, a lot of doctors apparently are skewing the facts (or are complete idiots which totally would not surprise me) and telling people that Still’s is a one time thing for the majority of people and that, given that, they will be able to return to their normal lives soon.
It would be so easy to get very defensive and just go off about how I have been sick for 19 years (pretty much exactly today actually – more on this later), how I’ve done a million things from juicing to natural remedies to more and it never did anything, and how despite a trillion prayers, blessings, copper bracelets and more I still am ill.
Oh, it is soooo easy.
But the right way to approach it is with information. Only 20% of all Still’s patients experience any kind of remission. Of that, the majority is short lasting and when the disease does pick back up it is often worse. That’s not according to me – that’s according to the Arthritis Foundation and an article written for them about Still’s by the foremost SD doctor, Dr. Cush.
By having that knowledge, I was able to give an explanation why someone was giving misinformation and it was appreciated by many – both those who did know this and were drafting probably their own angry responses, and those who didn’t and really wanted to know their odds of remission.
We have to be real with each other. Lies and misinformation only separate us and make the case of why we need to raise awareness somehow seem less.