5 Things I Learned From Leading an AS Support Group
In 2007 I opened my Facebook-based support group up for business, and it has provided me a lot of knowledge and understanding about our community as a whole.
Here are the 5 things I learned from leading a support group.
1: Doctors don’t explain anything!
I was going to save this one for last, but it is probably the most frustrating occurrence that is evident by the posts my members make.
“Hi, I’m newly diagnosed, and I don’t understand anything!”
Well, why not?
Didn’t you just come from your rheumatologist?
Newly diagnosed patients should have all the information in the world. They were just given a big and hard to pronounce diagnosis that explains the major pain and stiffness they have been experiencing probably for years.
Information should be piled upon this patient in the form of brochures, informational videos, and/or websites. Time should be taken to answer all questions until they know exactly what spondyloarthritis is and how it can be treated.
But, from reading the posts of the newly diagnosed, this is not the case. Doctors aren’t taking the time to share information and answer questions. Even after a diagnosis appointment, they often treat it like a 3 month follow up 20 years after diagnosis.
“Try these pills and see you in 3 months.” Or, they are giving off the persona of “Don’t bother me, I don’t have the time for your silly questions.”
One of my mantras has always been: “Never leave an appointment unsatisfied. Your doctor works for you, not the other way around.” If you have questions, ask them. There is nothing wrong with going online and asking questions, but the bulk of the information should be coming from someone in a white coat.
2: Treating spondyloarthritis is dangerous
Okay, the treatment for SpA is not actually dangerous, but one of the most common conversations I see in my support groups is fear about starting certain treatments, especially biologics.
“My doctor wants to put me on XYZ, but I'm really afraid of the side effects! What should I do?”
Going back to patients not getting all the information they need, the claim at the end of the ad: “May cause Lymphoma” seems to be the only information they receive. Another drug might cause hair loss. One other could cause weight gain. And because of these claims, patients would rather not treat their spondylitis.
Talk to your doctor about any concerns you might have. Hear it from them. But, please consider that millions of people have tried these treatments, and continue to use them.
These treatments help slow the progression of the disease, and the longer you go without treatment, the more damage can be done.
My biggest regret is not starting treatment sooner!
Everyone has different experiences, what works for one person might not work for another, but don’t let the possible side effects turn you away.
3: There are a lot of “quick cures”
*ahem* There is no cure for spondyloarthris!
However, this does not stop the occasional (okay way more than occasional) post talking about how apple cider vinegar and turmeric mixed with wheat grass will cure SpA as long as you gargle pink Himalayan sea salt 17 times a day.
These types of posts are heavily watched and often restricted in my group. Not because I don’t believe that natural treatments work, but because they often carry a lot of baggage.
Sometimes people are trying to sell a product, or promote their website where they share recipes and lead people in naked yoga. But, the other piece of carry on that I find troublesome is that a lot of these posts imply we aren’t doing enough, or we are doing it wrong.
“You need to be committed to the program! Why do you want to live in pain?”
“If the apple cider vinegar isn’t from organic apples from Holland, then it won’t work.”
Shame is not a certified treatment for AS. Nor is having a Whole Foods in your town. And I often find out that so many of these quick cure gurus don’t even have arthritis at all.
There is no quick cure for AS.
Yes, there are many things someone can do to ease their pain, but posts that tell patients it’s their way or the highway are harmful.
4: Pets might be the best treatment
Scratch everything from #3...I think if we really focused our minds we could find the cure for spondyloarthritis in cats, dogs, ferrets and other furry friends.
Everyone says their pets do more for them than any doctor prescribed treatments. They keep them warm at night, they make them smile when they are feeling down, and they just give them so much love!
“I could never have done it without my dog!”
There is something to be said about the connection between the patient and the pet. And whether it is just a distraction from the pain, or actual spiritual medicine, pets make us feel better.
5: Our numbers aren’t dwindling
When I started my online support group, the AS population, at least in my world, was 1.
Then there was 10, 50, and 100 more people. And I thought that was it...But no...not even close.
I don’t want to put a time stamp on this article, but as of this moment there are ~38,400 members...And more and more join every day! So, it very well could be 50,000 if you are reading this a year from now (conservatively).
38,400 members make up just 1% of the 3.2 million that have been diagnosed in the United States alone. And there are so many more who are currently living in pain and have yet to receive their diagnosis.
The US, UK, Australia, Canada and India make up the most represented countries. With Sydney, Australia being the city with the most members.
The fact is, the numbers keep growing, and have stayed at a pretty consistent rate of ~800 new members a month.
I don’t list this to brag, I think it is incredible that the numbers of people both being diagnosed and seeking support keeps growing.
Will we ever truly know how many people have spondyloarthritis?
I hope so.
Have you taken our In America Survey yet?