"Sometimes it's the Small Things..."
Updated: Mar 26
I had been diagnosed with fibromyalgia and was still working full-time. I did have periods of missing work because of my illness which also included other autoimmune issues. However, I had a transient ischemic attack (TIA) which left me sitting or laying for about a year at home. I received multiple diagnoses involving lupus, and Sjogren's syndrome, and learned that my auto-immune system was attacking my thyroid. I was lost after becoming ill, getting a diagnosis, and ultimately becoming unable to work. I found myself with a huge lack of medical support and no real treatment plan.
After experiencing all these issues, not understanding what to do, and receiving multiple diagnoses and comorbidities; dealing with it all became difficult. There were and are problems accessing treatment and services. This all caused me to create my blog at “Frequently Fibro” and began learning about advocacy.
I started out by making connections in my local community to educate myself and gain insight. I had open conversations with several other persons with fibromyalgia regarding their experiences with the disease. I also observed and participated in frank discussions with others during appointments, and treatments. I found the conversations to be insightful. These chats were filled with knowledge and lived experiences that I found helpful and comforting. I gained more useful information from these conversations, which occurred strictly by chance. I actually felt more reassurance just knowing I was not alone in what I was experiencing and this helped to ease my own frustrations and anxieties. These informal support groups left an impression on me. However, the discussions also illuminated the gaps that exist within the medical care system.
I met some wonderful people virtually, who are advocates for fibromyalgia and we found we are all experiencing the same issues not only physically with having fibromyalgia but also from a social perspective. Thank you to Kristal Kent over at the Fibro Pain Chronicles https://www.facebook.com/Kristal13 and Veterans Voices for Fibromyalgia https://www.veteranvoicesforfibromyalgia.com/?fbclid=IwAR0Q2IfarOx_aHCQHlxdrxkObn2syYPKgmyggp6aqcICJilu0S_EPlyBKiQ .
Melissa Talwar over at Support Fibromyalgia Network is a force of nature herself and an organizer of the first Virtual Fibromyalgia Conference https://supportfibromyalgia.org/?fbclid=IwAR3bzFuhygSVlqGqFBv8Kn9jDxgGnzpZMc5dRqz3SofFp_Kii0SwCgVF1xw Melissa and Kristal are about lifting up one another. You are both so inspiring and fabulous. Thank you! These people I have mentioned show pure kindness and support which is truly admirable. They know the only way to change the current situation with fibromyalgia is to collaborate and unify.
" Stop Collaborate and listen......" isn't that a song... lol
I also, found a new friend Carrie Kellenberger, an extraordinary advocate at My Several Worlds, a blog about the daily challenges of living with a disability in Taiwan. Carrie is a magnificent advocate for fibromyalgia and arthritis. https://www.myseveralworlds.com/
Carrie is a Fibromyalgia 2022 Legacy Award Winner!
Three Admirable and Inspiring Advocates
Kristal Kent Melissa Talwar Carrie Kellenberger
Veterans Voices Support Fibromyalgia Network My Several Worlds
Fibro Pain Chronicles
As COVID-19 began and progressed, people with fibromyalgia experienced cuts and changes to their modes of treatment, a lack of medical support, and personal support care. The problem is that many people with fibromyalgia have been “lost in the shuffle”, having no specialist care and have not been provided any clear medical treatment plan. In addition, people with fibromyalgia often acquire other medical conditions, which makes them complex cases. In totality, the cuts and lack of treatment, and care have impacted negatively on a person with fibromyalgia. Anxiety and depression, from the experiences of being gaslit and not being heard or treated properly within a medical setting fester and also become obstacles to accessing any assistance.
I also experienced this as I struggled to get better medical investigation and diagnosis and I spent almost three years marking time waiting for services. Most persons with fibromyalgia have been accessing virtual treatment during COVID and beyond. The problem is some people lack the knowledge or technical skills and financial means to access virtual treatment. It can be costly for some people who are on disability benefits to own cell phones, tablets, or computers. Further, while being able to access your physician virtually is convenient, there are issues there as well.
The reason I blog is to share my journey and thoughts, so others who relate might feel better and find some support. I blog to give myself some measure of control over my life. I blog to remove the stigma that exists for this illness and cause awareness. I blog in the hope that at least someone is positively affected and finds comfort in my words. So, that they truly feel less alone and diminished. I do not blog for pity or attention. I blog to advocate for change. I soon learned that many like-minded people with fibromyalgia want to make effective changes to the medical system, such as easier access. improved treatments, and overall to be taken seriously.
I became involved with the founders and steering committee members of the Fibromyalgia Association Canada (FAC) in forming a national organization for those with fibromyalgia for the same reasons. Once again, I was impressed with the members. Their individual strength in character, what they have endured, overcome, and how they push through some hard days to work towards the empowerment of persons living with fibromyalgia.
It's a wonderful thing when people come together in a volunteer capacity, to work towards a collective good. Especially, people who have never directly met each other, from vastly different backgrounds, and from all over the nation. The most incredible aspect is that all these volunteers have virtually come together while coping with chronic illnesses, that impact their daily functional abilities. FAC has accomplished much in the last two years and it is amazing.
Since I have become involved with the Fibromyalgia Association Canada "www.fibrocanada.ca" and found a caring group of people who all are working passionately towards fibromyalgia advocacy and awareness. The members are invested to bring about positive change for those living with fibromyalgia. Each person involved with FAC has lived experience with fibromyalgia and shares in one another’s journey with this chronic illness. We have all experienced a lack of medical investigation, delayed diagnosis, and no real pain relief. We share these experiences, and our pathway forward with positive insights. While FAC is not a support group, there is a sense of belonging and being understood, where finding others on the same journey. FAC is intended to provide an organization for persons with fibromyalgia to meet together and become a voice for change. Sometimes, it is the little things that bring comfort, like being with people who understand you and what you are going through when not many others do. It is in those little things that big things can happen… Find inspiration, become mindful, and set intentions.
“Don’t be pushed around by the fears in your mind. Be led by the dreams in your heart”
Roy T. Bennett