Ben’s Friends communities aim to provide patients, as well as their loved ones and caregivers, a supportive place to connect with others like them.
We do our best to make our communities safe for all our members – carefully screening membership requests, constantly monitoring posts, and ensuring that everyone is contributing to the peaceful atmosphere of our communities.
And we are proud to say that our members are part of the reason why ours are more than just forums or discussion boards but are indeed communities. Aside from visiting our sites to find answers to the questions they have about their condition, our members always find a way to help other people who are going through the same things.
Among others, they offer encouragement to those who could benefit from it and share information about the doctors and clinics that have helped improve their condition.
JayCS, a member of the Living with Fibromyalgia community, carefully documents his day-to-day experiences and shares them with his fellow members daily as blog entries.
Details of his posts include the specific symptoms he experienced during the day, the treatments and management techniques he used and how much they have helped, and the other things that may have triggered the symptoms such as the food he ate and activities he did.
There is no one specific treatment that can cure or alleviate the symptoms of fibromyalgia. Like other chronic illnesses, it requires a comprehensive treatment plan including both medications as well as self-care strategies. More importantly, since each person’s case is unique, a thorough assessment of what works and what doesn’t can be of great help.
JayCS’s blog posts provide a wealth of information, not only to fibromyalgia patients but also to people affected by other chronic conditions. Aside from finding information that may be helpful for their symptoms, they can gain ideas on how they can also monitor their condition and document their management techniques.
To know that our forum has been helpful in a member’s journey is a source of great happiness for us. Seeing how our members care for each other and value our communities like a family is just heartwarming.
Recently, we interviewed JayCS and we’re happy to share with you his Ben’s Friends story.
1. Please introduce yourself and tell us a bit about your life.
Since childhood I’ve always been interested in most things, loved libraries, encyclopedias – a curious mind in more ways than one… 🙂
So the dawn of the internet, wikipedia and connecting with others opened many doors and fulfilled dreams of satisfying my curiosity about life & people.
People who know me now find it hard to believe, yet up to the mid-90s I found computers ugly and unwieldy – preferred typing on paper and cutting and pasting that!
Then needing help for psychological disorders in my family, I realized that although computers themselves don’t have a soul, they can connect souls.
At the same time I have been personally affected by downsides of all this. That is why I love to use it & write a lot, but as anonymously as possible to avoid internet privacy issues.
Areas which interest me most are probably psychology, learning, teaching, science & medicine, faith(s), listening to & making music in all genres, all arts, esp. collecting good amateur paintings.
Being able to do & share most of what I enjoy in a digital way has made me a minimalist, not needing much belongings.
The paintings don’t occupy floor space, just our walls 😉
2. Tell us your disease and diagnosis story.
I’ve had many health problems since my teens, especially back, skin, stomach, gut, and nerves acting up chronically.
My families and docs couldn’t help me much, but over the decades I worked on all of them and managed to get them all under control.
At 50 I was fitter than ever before in my life, doing 1-2 hours per day of sports. So I’ve always needed to find out what’s going on in my body myself.
This, like my interest in medicine and psychology, was a good prerequisite for coping with the fibromyalgia I’ve now experienced the full brunt of since 2019.
Who knows what exactly caused it – but it suddenly threw me completely out of enjoying an increasingly successful career, which I’d made into a dream job.
It put me on sick leave for 10 months, slow job rehab couldn’t get me above 15 hours per week and now I’m struggling to work 10 hours per week, with the help of 3 kinds of disability support.
Thing is though – I’d never done too much for myself, I loved helping others all my life. Now it’s time to care for the one person who had missed out all along.
Due to fairly good insurance and serial and parallel appointments, I managed 45+ docs in 1.5 years.
I got the diagnosis five months after seriously starting to look for it. Then checked every symptom, old and new with every doc necessary, to make sure I wasn’t overlooking anything. Especially as two chance findings along the way weren’t at all funny at first – a spinal tumour and genetically high blood fats, although both now seem completely under control.
3. What’s the story about your joining this community?
The docs, meds and most treatments I tried (at that time over 60 already) could not help me.
Neither could a rheumatology/fibromyalgia clinic with further 20 treatment types and quite a few fibromites.
I remembered the 90s where I had been helped by mailing lists (some with 1500 people and more on them). Searching for something similar, I realized like then I wouldn’t find anything in German language. It’d have to be English again, which wasn’t a problem.
I was wary of forums, because in the ‘90s and ‘00s, the atmosphere seemed sarcastic and full of trolls.
But I realized forums had taken over, apparently, now well-controlled.
I tested and quickly took part in 4 of about 6 for fibromyalgia I had found. I realized I had many experiences to share and wanted to listen and learn too.
Actually Ben’s Friends livingwithfibro seemed just nice, but more off topic than others at the time.
Searching in the archives has, in the meantime, shown me treasures of information around 2012/2013.
Nowadays I try to bundle these, whilst adding more input.
What I realized after some weeks was that this community was not just nice, it was a really warm, friendly atmosphere, from members and moderators alike.
When I decided I’d like somewhere public to post my daily experiences & development, I was sure this was the right place.
One of the moderators suggested I could do a blog and since then – October 2020 – I haven’t looked back or even left one day out.
I live for and love and am inspired by the interaction with the other members and hope people are enjoying and benefiting a bit from my ideas.
What really helps a lot is the brilliant forum software which makes formating, editing, saving drafts & hyperlinking really easy.
4. How has being a member changed you?
In my blog I’m inspired by knowing I’m getting 25 to 35 views a day and being different to all other blogs I’ve seen so far. However it’s very personal and I’m concentrating on my own needs. That means developing my personal symptom analysis, trigger hunting and treatment experiences, adapting to my focus which changes continually.
To make it easier for others to follow I have a summary thread and also started weekly highlights. These also help me see where I have come from, am, and am going to.
Additionally to the blog, I try to listen and help where I can.
To do this I need a fund of bundled information, as I keep forgetting even basic things like the names of treatments I don’t take myself.
Doing this sometimes uncovers a hidden gem which I then do try myself. For this reason, I bundle information from research including the forum itself, then turning it into a bit of an encyclopedia.
On another thread, I list all applicable causes/triggers, symptoms and treatments I come across and am linking them to references.
5. Is there anything you want to say to your fellow members and moderator/s in your community?
My life with this condition would have been considerably darker without the livingwithfibro community. And I would have driven my wife crazy, just imagine she’d’ve had to listen to it all… O.o
I want to thank all the special people belonging to my community, members and moderators alike.
I don’t really know you, you don’t really know me, but you are an incredibly big and important part of my life and my ability to cope with this condition.
I am an optimistic person and enjoy giving, but I can only thrive on heartfelt warmth from my “penpals”.
Having this condition means I need to take a lot, and not just give, and this is what I get here.
I also want to thank everyone making this community, the platform, the software, the support possible with their time, energy and money.
6. Is there anything you want to say to other people who have the same condition?
I feel for everyone who thinks they might have fibromyalgia or a similar hard to define invisible chronic pain illness, and everyone who has to do with these.
Additionally, to being afflicted long-term by the often intense and debilitating variety of symptoms, it is doubly invisible in that it is even hard to diagnose and feel sure about it. Our brain fog increases that invisibility.
That all makes it hard to focus on a direction of action to find help, with the little energy we often have. A challenge for everyone.
I hope you find ways to get this focus.
Our forum may be of help to find what works for you, how to analyze your symptoms, find your triggers to prevent the symptoms coming up, and treatments to alleviate them.
But it may also help just to be and feel seen at last, and no longer alone….
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