Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
When I arrived at Ben's Friends, with a new diagnosis after twenty years of being a medical mystery, I was sick, sore and scared. The people here were so sensible, and eventually they convinced me that I needed to get a grip, and get a second opinion. I'm not sure I would have ever got there without them. I got the second opinion, got some aggressive therapy, and that changed the course of my disease and my life. Without the information and "prodding" that I got here, I don't know where I'd be today.
When I felt better, I was happy to give back as a moderator!
When I found Ben's Friends, I was newly diagnosed, scared, in pain, depressed and anxious about living life with a chronic disease. I came to the site daily to read posts and discussions, reflect on my own situation, to ask questions, and get informed. The moderators and other site members were welcoming, helpful and supportive. The site really gave me a boost in what felt like a very dark time. When I needed sympathy and understanding, I could get that here. When I needed a kick in the pants, I could count on getting some of that too. Most of all, the Ben's Friends community gave me the knowledge I needed to understand my diagnosis, to take charge of my treatment plan, and to learn to live a full life with a chronic illness.
When I joined the site I already suspected that the care I was getting from my then rheumy team was lacklustre to say the least. It's lonely & scary having a chronic disease and the medical professionals are a vital lifeline. Therefore being at odds with them is daunting, it's all too easy to stifle doubts and accept their treatment regime even if it barely amounts to that rather than rock the boat.
The people I met here gave me far more than moral support, though I got that in spades. I was able to discuss my misgivings in a considered way with others who had far more knowledge and personal experience of the disease and its treatment than I did. Empowered to ask for a second opinion, I embarked on a long wait for a new rheumy, checking in here regularly to learn more and laugh / cry about what we now call 'The Gap'. I made friends and gained the confidence to be my own advocate.
After my first appointment with the new rheumy I popped in with the good news - he did think my disease was serious, his reaction suggested that he thought it had been under-treated and his view was that biologics were the best way forward. People here were pleased for me, they shared in my relief, and when a little while later the decision was made to start on Humira, there was an air of celebration. How amazing is that! Especially as most of those who accompanied me on this journey are on the other side of the Atlantic!
I really like it when we help people move forward. There are no quick fixes, no miracles to be had, but you know when you're stuck in an impasse and you certainly know when you've got out of it and can start to hope again and live your life. And the site is vital in other ways too ... but for me it's Escape from Gap Land that sticks in my mind most.
In June I was diagnosed with PsA, a disease I’d never heard of, after a year and a half of ever advancing joint pain and a knee replacement which did not heal along normative time lines. I was initially almost relieved that my pain was not something I was imagining! Following that, and an initial course of treatment that wasn’t very successful, this forum became a lifeline, providing both concrete information and a picture of the journeys of others with similar diagnoses. Some of it scared me, until a forum member reminded me that many of the success stories might not be posting as regularly as those still struggling - since they were out living their lives! Comforting words right when I needed them. Now into a second phase of treatment and feeling much better, I continue to be very grateful for this forum and its members.
Bens Friends has helped me feel less alone in my long struggle with this disease. I think being an "old timer" has helped some other people cope with PsA. When I have a question about this disease, I can almost always find an answer. Just know ing that you are not alone, and that there is always someone worse off than you helps, as well as always having an understanding ear. I've gone from just learning about PsA, then learning to live with it and treat it. Trust me, the learning never stops.
I found people with like mindedness, support (even from long distance) and most importantly empathy on here. Medics do not experience what we do, they read about it, learn about it (and do so to a high standard, mostly) and prescribe medicine. The people on here are kindred spirits who also offer advice, but also walk in our shoes. Thank you all
I am thankful for Ben's Friends being here to answer many questions I have had and still have about Psa. I was told I had Psa about a year ago. After looking into other possible reasons for the pain and swelling in my toe and hands and wrists and now getting some pain in both my ankles. I am sorry it has taken so long to write something down, I have started many times but got stuck spelling a word or two and put it off, well you guys are awesome I have been encouraged and informed and blessed and wanted to say Hello and thanks for all your help. Scotty
When I first discovered Ben's Friends, I was newly diagnosed and unable to start treatment. I found wonderful information on not only the disease, but what I could do to improve my overall health while waiting to be able to go on medications. It was wonderful to be able to talk to people who could understand what I was going through and help me wade through all the information and advice that was coming at me from all directions. This site was invaluable in helping me understand the need to treat the disease asap and in helping me not feel alone in what I was going through.
I'd been diagnosed and undergoing treatment a few months when I discovered Living With Psoriatic Arthritis. I 'lurked' for a while as I'd never participated on any online/social network before but any concerns I had were soon put to rest as it was impossible to ignore the honest and genuine people in this community. When I signed-up the welcome was amazing and since that first day the community has been open, friendly, supportive, informative, cajoling and has empowered me to understand my disease, the treatment options and advocate for myself when necessary.
Being able to share what I have learned from my own PsA journey to help other people is a privilege and I feel honoured to be able to support Ben's Friends in my Moderator roles.
No-one chooses to have a rare incurable disease, but as this is my lot in life I am so pleased I have everyone here walking by my side.
I'm ever thankful that I stumbled upon this website searching online for any information I could get about treating my PsA. I wanted natural remedies--I was so afraid of the biologics after seeing the TV ads and disclaimers about all the awful SEs and weakened immune system they can cause. Most of the moderators will remember me as the negative Nancy who was refusing my doctor's advice to take meds, but I had been diagnosed 5-1/2 years prior and the PsA that was slowly progressing for about 4 of those years was quickly overwhelming me. I know some of the mods were very upset with me because I came on here saying I didn't want to start treating the disease because I hated doctor appointments and I was worried the biologics were dangerous, etc., etc....
Finding LWPsA.org has been a godsend to me. The encouragement and support was what I needed to make smart decisions about treating my PsA. Some of you might remember my bad attitude--I was so sure the biologic wouldn't work and it would be depressing. I couldn't have been more wrong.
I'm grateful to all of the moderators. Their dedication is the cement that holds this place together and makes us feel welcome and eager to come back again and again. I've made some friends on here--friends who understand me, who aren't bored with talking about anyone's PsA aches and pains, and friends who I feel are concerned for me and I for them! It's a wonderful place--I can't say enough good about it!!!