Why We Need Community
In the wacky, wild, and often heartbreaking world of ankylosing spondylitis, community is key. Whether it be online communities like this one, in-person support groups, patient-focused conferences, or casual friendship, having someone to share this AS life with, makes all the difference. But, there are other reasons why finding community with other patients is not only preferable, I think it is fundamental.
Someone who “gets it”
Life with ankylosing spondylitis can be lonely. Not only does our pain and fatigue often keep us away from our friends and family, but it’s also a struggle when the people who are around us can’t or don’t understand what we are dealing with.
I have tried to explain what I am feeling to others. I imagine most of us have tried to explain AS before, and have been met with blank stares or gross misunderstandings. I’d say literally 90% of my conversations either end in silence or with a shopping list of what I “absolutely need to try to beat this thing.” Most people either don’t want to understand or just simply can’t.
This is why it is so important to have someone who “gets it”. A fellow patient to share your struggles with who understands all day pain, sleepless nights, brain fog, and insurance companies, to name a few. Having someone to share these events with will make you feel not so isolated and is a reminder that you aren't faking. Ankylosing spondylitis is real, and so is your need for community.
One of the best parts of being in so many online and in-person communities is the opportunity to share treatment stories. Before I switch my meds or try some kind of physical therapy, I love to ask my community. Not so much about if it will work or not, but what kind of side effects to expect.
There was a time I was getting sick every 3 months. I thought it was just my bad luck getting sick while working in a school (imagine that). Then I figured out I was getting sick when I upped my dosage of this one medication. After asking my community, I found out, pretty much everyone gets sick the day after a dose change. The medication was worth the day of illness, in my opinion, but it was good to know that I was not the only one.
Trust me when I say, enter any online chronic illness community, nobody will hold back when it comes to talking about the treatments that worked and did not work. Just use your best judgement and know yourself. Everyone is different, and everyone reacts to certain treatments differently. So, what works for one person might not work for you, however knowing what to expect does make navigating the AS life a lot more comforting.
Find leadership opportunities
When I first went public with my ankylosing spondylitis, I never expected that very soon after I would be in a patient leadership role. But, it happened, and it’s probably my proudest accomplishment.
I'm not saying this to brag, but I get messages almost on a daily basis from newly diagnosed and advice-seeking patients who want to know more about something AS related. I’m apparently seen as an ankylosing spondylitis expert, or something. And only 5 years ago, I didn't know what the word “advocate” meant.
This all became possible because of my community. I became close with other AS and chronic illness patent leaders. And through them, I received opportunities to lead. There is no shame in hitching your wagon to a shooting star if you both can accomplish something together. Now, thanks to these same communities, I can encourage others to be patient leaders, and our numbers can grow.
Speaking of which...
Grow our numbers
Please understand, I don’t mean infecting the population so more people get AS. That wouldn't be possible anyway. But, through community and awareness, we can get the undiagnosed diagnosed. Far too many medical sites want to convince the world that ankylosing spondylitis is rare. AS is not rare, it is just not very well known. Maybe it’s because it’s not well researched, or because it’s hard to explain. Or, maybe, it’s because its 21 very confusing letters, but ankylosing spondylitis does not get the exposure it deserves.
Lately there has been a push towards better exposure. Rock stars Dan Reynolds of Imagine Dragons and Mick Mars of Motley Crue have both been more open about their AS experience. Different awareness groups have done some amazing educational projects. And, AnkylosingSpondylitis.net was founded. 2019 has definitely been “The Year of AS,” but there is still so much more our community can do.
So, I encourage everyone, depending on your comfort level, to get out and spread the name of ankylosing spondylitis. To ensure we get the attention from the medical world and the world around us, we need to make it a household name.
Make Lifelong Friends
My AS friends are my best friends. We learn together, suffer together, succeed together, and grow together. I consider a few of my AS friends to be members of my family. The people in my life may come and go. We all change, move, and have different interests. But, my AS brothers, sisters, and non-binary siblings will never go away. We tell each other about opportunities to advocate and educate, go to conferences together, and make connections and grow our numbers.
I love my AS community. And that will never change!
Do you use the word disability to describe your AS?