Getting Support Is NOT Giving Up
I’m a support group guy! Some advocates are good at policy, others are good at knowing the latest medical trends, but I love leading support groups! That is where my heart is.
I personally think all AxSpA patients at some point can benefit from a little community with a group of people who know what it is like to live with this painful and often confusing condition.
So, when I hear people tell me that they don’t think they need to be part of a support group, I get a little confused.
On my worldly travels, I once met a woman who has psoriatic arthritis and her 16 year old son has AxSpA. As I do whenever I meet a person who has any form of Spondylitis, I whip out my business card and I invite them to my local support group meeting.
“Oh, no. We aren’t bad enough to need to attend a support group.”
Bad enough? What does that have to do with anything, I think to myself.
It is at this point I realize, some people view attending a support group as “giving up.”
Not the end of the road
I have been leading AS/AxSpA support groups since 2007, and I have seen every type of patient since then.
New patients wanting information on this condition. People who are starting new treatments. Those who are struggling at their jobs. And, patients who just want to share their success stories.
What I rarely ever see is people who are giving up.
Yes, people do sometimes feel like they are at the end of their rope and they need a safe place to vent or hear from someone that things are going to be okay.
But, just by attending a meeting, and/or sharing their story, that shows they are not giving up! They have taken the step to say, “I was given this condition, but I want to know how I can continue to live.”
Going to a support group meeting or posting on an online support group is not the end of the road, saved for the most downtrodden Spondylitis patients.
It is the start of the road to living the best life you can.
Attend a meeting
If you are considering attending a local meeting, asking questions, or posting your story online, let me give you a little look into what to expect.
At my local support group in St Louis, it is a very relaxed atmosphere.
My co-lead Kristen, and I welcome everyone whether they are patients with any form of Spondylitis, or they are loved ones looking for more information on how to help.
When we can meet in person, we hold our meetings in a little conference room off the library of a local chiropractic college. A totally chill place with comfy office chairs, where we sit around a table and talk about our lives with our conditions.
At my group, we love to talk about new at home treatment options. We try out new devices like back rollers and massagers. One meeting we all did DDP Yoga together. Then we open the floor to what helps other people at home.
Attendees can talk about their treatments, and rheumatologists, and anything else that is going on in their world.
What we don’t have are people who are giving up. Patients whaling into the air about how life is terrible, and then we all cry and hug.
I guess movies created this image of a support group. People sitting in a circle sharing the worst part of their lives. Maybe this happens in other groups, but I’ve never seen it. Meetings are productive and positive, and not a place where people come to give up.
Sharing online
There are so many support groups and message boards online where patients can go to ask questions, and share stories.
Right here on on AxialSpondyloarthritis.net there are forums where you can feel like part of a community. Community Advocates are ready to answer questions, and let you know you are not alone.
Search any social media platform and you can find any number of groups full of people also living with AxSpA. Sometimes online groups can be a little hit and miss as not everyone responding might give the best advice. But, if you pay attention, you can figure out whose advice you should follow.
I give my personal seal of approval to Twitter, however.
Just searching for #AxSpA or #Spondylitis or any associated words can lead you to some amazing patient leaders who have formed incredible communities where patients can feel like they are part of a team.
Axial spondyloarthritis and ankylosing spondylitis are not rare conditions. There are literally millions of us out there.
You may feel exhausted and in pain, but you should never feel alone.
No matter where you go, I want you to remember...
Getting support is NOT giving up!
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