Can you believe it? Our Living with Psoriatic Arthritis community turned 10 this month.
Time flies sooo fast.
For our long time members, I’m sure many of you will get a bit emotional and try to recall the years in the community.
For our newbies, you surely will enjoy hearing a tidbit or two about our PsA family.
So as a way of celebrating this milestone, we asked our wonderful community moderators to share some reflections, memories and messages for our members. Here they are.
Happy 10th, everyone!
Do you have any trivia about the community through the years that might be interesting for the members to know?
The PsA community, over the years, has had many new members show up, undiagnosed, but with a suspicion that they might have PsA.
Our “team” (members who play nicely together) then got to work, provided them with information and personal experiences to fuel their doctors’ diagnostic process.
Sometimes we recommend a change of doctor, or even a specific doctor if we know the member’s location. We’ve had a great record of helping people “get sorted out”.
Sometimes that was providing them with information for their GP/PCP.
Other times, helping them identify symptoms that the doctor didn’t ask about, and they didn’t think were connected, e.g. Who would go to the doctor about their sore feet, and think (or even want) to mention that they get raw/itchy patches “where the sun don’t shine”? But yes, in PsA they are very much related!
We’ve played “midwives” to a great number of PsA diagnoses over the years!
I joined the community 10 years ago. I have been amazed at the change in the dynamics of the group over the years. I was looking for information and what I found was fear. Especially fear of treatment and all the new medications coming on board. Over the years that has changed as the mantra of the community has become : “fear the disease not the treatment”.
Describe, don’t prescribe has been around for a long long time. I think I’ve been here for almost 8 years now, and it’s been floating around that long at least. And Tom and Seenie have also been around and active my whole time.
Where to start…there have been some very silly threads over the years – ‘silly’ as in totally daft & totally needed!
We have many long-standing members whose activity on the site changes depending on circumstances. Many are less active, reading rather than posting, as they get medication that works and life returns to semi-normal.
It’s wonderful too when these members touch base with the community and let us know how well they are doing.
Can you share 1-2 of your most unforgettable moments in the community?
My most memorable? That’s easy! I was diagnosed already, and being treated by a rheumatologist who maintained that I had mild PsA.
Based on what I was saying on the community, several members were of the opinion that my disease wasn’t “mild” at all. One in particular (you know who you are!) really pushed me into finding a clinic that would give an expert second opinion. I went.
Those doctors were horrified at the condition I was in and couldn’t get me on aggressive treatment fast enough.
The results were literally life-changing. I haven’t looked back.
I know my life today would have been very different, were it not for my Ben’s Friends community.
Perhaps my favorite time in the community was when we had weekly “cocktail parties”. The “Spoon Theory” was the hot thing in those days. It’s still perhaps the best way to learn how to cope and understand chronic illness. As a result Ten Spoons Wine (made on my old family homestead) has become the official Wine of PsA.
I love how active the group is. Whenever I have something pop up, I can ask a question AND do research on the site going back many years. It’s actually really entertaining doing a search on a topic and finding some of my earlier words of wisdom lol.
One of our members has recently popped in with an update about how she’s doing. She has finally gotten a handle on her fatigue, for the first time in many years. It’s wonderful to see her feeling normal for the first time in so many years, and we can all celebrate in that.
See above (answer to first question) — one Christmas thread featuring, amongst other things, tntlamb’s ‘official PsA Christmas card’ – a melting snowman (okay, I know, you had to be there I guess!)
But also, not a moment but months of the amazing support and advice I received when I first arrived feeling frightened & confused. I still benefit from that in various ways, it set me up to handle this disease as best I can.
A few years ago a poster talked about rib pain in the area where the bra wraps around, and lots of female members added their piece – clearly enthesitis not helped by our womanly bits, and fairly common.
Of course who else but tntlamb to chime in with the specific and practical solutions (including instructions for stretches) for how to help with pain around the ribs caused by bosoms! The funny part was that we were all so used to him having the answer, nobody was even surprised he knew what to do
Any message to the members?
Life with a rare condition isn’t easy, but you do have the power to make it a bit easier. Learn all that you can about your rare condition, and learn how to advocate for yourself as a patient.
Your Ben’s Friends community is probably your best resource for doing that: your fellow members can help you gather information, and give you the social and emotional support you need to become your own best advocate.
As my role with Ben’s Friends has evolved from a lost patient, to moderator, to Mod support with the larger community and now Co-executive Director, Living with PsA is still a critical part of my life though I don’t (and I am sure to the relief of many) participate as I once did.
In the larger Ben’s Friends Community AVM, our first Community, is the Girl who “brings us to the dance” but PsA keeps the music going and is responsible for what Ben’s Friends is today. I’m not certain most members know that the original team of PsA Moderators I put together ultimately became the first Mod Support team taking what was happening in this community to the larger Ben’s Friends Community. Today, three of our Mod Support Team are PsA members. Our executive directors are PsA members. PsA is still the Ben’s Friends SandBox. What we learn, try, and integrate into this community ultimately becomes a part of every Community (43 at present).
The basics of every BF community that has made us what we are, were all coined on PsA:
- “Describe, don’t Prescribe.”
- “To get support, give support.”
- “We may have a rare disease, but that disease doesn’t have us,” and
- “Fear what the disease can do, not the treatment”
Thank you everyone on PsA for making a difference in the lives of 75,000 Ben’s Friends Rare Disease Patients and Members.
Keep coming, keep showing up, keep being active. We are a big family, occasionally slightly dysfunctional, but always supportive.
Don’t assume your question or your concern is ‘silly’ or that you should keep your anxiety to yourself. Anonymise your profile as much as you feel the need to and lean on all of us.
Always remember we are here for each other – it’s a place where no matter the other things happening in life, somebody will always understand.
So here’s to all of us, and to many more years of safe, supportive and warm companionship.