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Then & now: navigating fibromyalgia in the digital age

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Photo by Amy Gahran

Today, a random Google search on the word fibromyalgia (fms) brings up over 15 million results…a far cry from the situation years ago.  

Skimming through, I was surprised to find that many of the search engine’s offerings were relevant. It’s a weird habit I have, that occasionally I will summon Google to give me all the current talk about fms.

Seven years ago when I was first diagnosed with this neurological condition, relief intermixed with anxiety, like the sweet-sour taste of honey and lemon swept over me.

I had been given a little booklet at hospital but I wanted to find out more about this condition whose name I couldn’t pronounce without great difficulty.

Much of the visit had been a blur – back then I struggled immensely with fms-related cognitive impairments, and my head felt like it was in a perpetual state of fogginess. I was only able to catch occasional bits and pieces of conversations, if I managed to keep myself from dozing off in the persistent episodes of sleep paralysis that plagued me.

What I do remember was rushing home so that I could do an internet search on the word. Fibromyalgia. I was disappointed.  

Fibro-what?

I can’t recall now how many results Google had brought up then, but I still remember the harrowing feeling that dampened the relief I felt when the specialist identified the nameless monster that had dogged me my entire life.

‘How was I going to treat something I didn’t know enough about?’ – was one of my first worries. I had a flicker of optimism as the specialist sent instructions to my local GP for me to be referred to the Fibromyalgia Clinic at Guys and St Thomas’ Hospital, where a rheumatologist more versed in fibromyalgia confirmed the diagnosis and gave me the most comprehensive treatment plan I’ve had received, including referrals for physiotherapy and cognitive behavioural therapy.

But that hopefulness dwindled every time my diagnosis came up in conversation.

The dearth of information online mirrored the then status quo with the public’s awareness of fms – and this, my second worry, turned out to be founded.

I discovered that most people, including my local GP and people in my life knew little or not at all about fibromyalgia, and were often reluctant to accept first-hand accounts of it. I faced great skepticism and stigma, and spent much time trying to validate my daily suffering. I’ll never forget the countless arguments with then GPs referencing ‘mind over matter.’ As simple as this may sound, it had grave and pernicious effects on my health and journey.

I partially blamed the lack of scientific research and accessible information, as well as human tendencies to dismiss what the eyes cannot see, i.e invisible disabilities.

Me versus fibromyalgia

The lack of information was in fact one of the biggest challenges I had to confront.

I was at war with an enemy I didn’t know. I had always been a person who felt equipped to take on whatever battles lay ahead once I had the information I needed. Information was my armour. But for this war, I stood before my enemy bare-breasted and ill-prepared. That is, until my own journey of discovery revealed an unexpected and enlightening path.

By chance (or not…I don’t really believe in chance) I came across the then only fibromyalgia support group in London, at the Royal Free Hospital and started attending. It was disorganised and chaotic at the best of times, but no one seemed to mind. I found that the patients there had strikingly similar stories to mine. Exchanging narratives was how I started learning more about the fine details of fms – what worked and what wasn’t helpful. I eventually stopped attending, due to the long commute and when I felt that the group had done all it could for me. By then, I was slowly on the road to better managing, one painful step at a time (literally).

I began to ponder more and more about the great wealth of knowledge exchanged between patients, who often like me, felt ill-equipped, but didn’t realise the power we held.

After much consideration, I took to blogging, so that I could share whatever little knowledge I’d come by on winning the war against fms. Boy, oh boy, it’s been one hell of a journey. I was half apprehensive – expecting more criticisms of laziness, imagined pain or meditation-can-cure-anything lectures, and half determined that this was something I had to do. Afterall, other fibromites facing the same trials should know that they were not alone, even if it felt that way sometimes.

Quite unexpectedly, I encountered a loving, nurturing community of bloggers; years of sharing, have fostered bonds of trust and mutual understanding that I’ve not experienced anywhere else.

What’s changed

Today, when someone is given fibromyalgia as a diagnosis, I am thankful that they can go online and google, and find relevant search results with a plethora of information. Doctors are now more well-informed, as are the general public; and sometimes, in conversation when I say the f-word, people don’t respond with looks of cluelessness but often with, ‘my mom (or sister, or cousin) has that. It’s tough.’ In London, there are more health services designed for treating fibromyalgia so that patients can get specialist care, instead of generic advice/treatment from their GPs. There are more organised support groups as well.

Equally important, if not moreso, newly diagnosed patients can find invaluable support from a strong base of bloggers online, who like me, share first-hand experiences of battling fibromyalgia.  In the UK, the National Health Service is seeing our value and role too, with doctors calling us ‘expert patients.’

There is great value in what we do and it cannot be overstated. For those of us who were diagnosed when there was little information online and in the community, we know the true value…the value of learning the hard way about our invisible enemy through experience and shared stories, because we also know the price we paid, and the burdens we shouldered when we were forced to roll up our sleeves and become experts in our own right.

Gentle Hugs 🙂

How has blogging (either as a creator or reader) supported you to deal with your diagnosis?

 

 

 

 

potofcallaloo
Alisha Nurse is a curry-loving writer & comms professional who holds a Master of Arts Degree in Journalism (International) from the University of Westminster, London. Get in touch with any feedback or questions via the contact form in the 'About' section.

8 thoughts on “Then & now: navigating fibromyalgia in the digital age

  1. I started blogging in fall 2015 and have loved it! I think the best part is connecting with people who really understand. I don’t feel alone anymore and it’s helped reduce the shame I used to feel. Thanks for sharing your thoughts and experiences!

    1. That’s totally true Snow! finding empathy and understanding is so important. That’s a great point I forgot to mention – I used to feel alot more shame (still a work in progress) but alot better now since connecting with others too. 🙂 thank you so much for sharing with me 🙂 x

  2. Excellent post, and indeed very true! For me, I did not know anybody with FM when I was diagnosed. And I live in a professional environment (which is about the only environment I thrived in until FM cut it short, LOL) where people with chronic illnesses or “weaknesses” (as they may say) are not welcome. The frustrations stemming from there is what made me start blogging, because I was sure there were other people in similar positions too, all suffering silently. And the support here has been amazing! Just to meet and support other people who feel like me (or worse) has made me feel less alone I think.

    1. Wow!! thank you for sharing with me! your reply gave me goosebumps! It moves me so much to hear the impact that blogging and connecting with the community had for you. It’s sad that the professional environment isn’t always welcoming for people with disabilities, despite all the talk about equality. I can relate to that as well. I’m glad that you feel less alone too! you have a friend here too! 🙂 x

    1. Absolutely! having information at hand also means that we can challenge doctors and take them to task. I felt good these couple of times when my gp kept stalling on my referral to say that I hadn’t tried other methods of dealing with my pain…but I listed all the things I started doing of my own accord, and she had to put my referral through! 😀

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