Perspectives of Fibro | Part One
I have conducted a series of interviews exploring different perspectives of Fibromyalgia. From carers to business owners to friends of people with the condition.
The inspiration behind this was seeing how different everyone’s Fibro journey is, no one with this condition experiences the same thing. With Fibromyalgia already being a very misunderstood and unbelieved condition, these interviews are designed to show the many complex sides of the condition and the effects it can have on people living with it, and the people supporting them.
Part One is an interview with Janet who runs an awareness and activist Twitter page, FibromyalgiaWellness (@fibrowellness). I’ve followed this page for some time and always find great tips and wonderful posts of positivity. In this interview, we find out about Janet and what inspired her to create this page, and why it’s important to raise awareness on social media.
If you could firstly tell me a little about yourself and your Fibromyalgia journey.
Trauma is a recognised trigger/cause of fibromyalgia. My case was triggered by a sexual assault that occurred when I was nearly 7 years old. The symptoms occurred progressively. Bilateral leg pain came on when I was 12 and I was diagnosed with fibrositis (an old name for fibromyalgia) at this point. My mother also has Fibro and her symptoms followed the same pattern at similar ages. Stress related to MBA studies at the age of 27 brought on pain in my arms and different flavours of neuropathic discomfort elsewhere in my body. As I near the age of 60, I have now experienced almost every symptom fibromyalgia is associated with. Because my personal experience and that of other people I know with fibromyalgia shows it can be progressive, I'm encouraged by the fact the medical community is moving away from insisting on old diagnostic standards associated with pain locations and tender point counts as these were always arbitrary and unnecessarily excluded some people.
Can you tell me about your FibromyalgiaWellness Twitter? What it stands for, what it’s goal is etc. I've lived with Fibro for a long time and have learned a lot about how to manage it along the way. As a nurse and naturopathic doctor, I'm better positioned than many people to understand medicalise and translate it into easily understood advice to assist others with self-management. Fibromyalgia Wellness is a conduit for sharing what I know while providing comfort and encouragement to those who are struggling.
Can you describe what a 'good' Fibro day looks like for you?
I find rating scales are helpful to define "good" and "bad". I use a 10 point scale where 10 is high and 1 is low. A good day would be characterised as: Energy - 7 or higher Mood - 7 or higher Pain - 3 or lower.
Can you describe what a 'bad' Fibro day looks like for you?
A bad day would be characterised as: Energy - 3 or lower Mood - 3 or lower Pain - 7 or higher. I avoid writing (or reading) detailed descriptions of miserable symptoms because I find them triggering. I can take on the pain of other people very easily through empathy. I then have to use additional energy (which might be low in that moment) to re-centre myself.
What is one thing Fibro has made you grateful for?
I've learned a lot from Fibro. One thing it has helped me understand is that your psychological state is not dependent on your physical condition. In other words, I can be happy even if I'm in pain.
Your page spreads a lot of positivity and awareness. What keeps you feeling positive in day-to-day life?
Having a spiritual (not religious) orientation definitely helps me to keep a positive frame of mind. I've learned that happiness is a choice, and that resilience is something you can learn to develop. Spending time in a practice of gratitude ("counting my blessings") reminds me daily that I am very fortunate.
Going forward, there is lots more research being done into chronic conditions like Fibro. In five years time, what would you like to see happen?
From a research perspective, I'd like to see more studies geared towards the development of tests for biomarkers that could support a fibromyalgia diagnosis accurately at least 75% of the time. Within the patient community, I'd like all of us to move away from the defensive posture expressed in comments like "Fibro is real!" The fibro-idiots who are convinced it's a garbage-can diagnosis that covers laziness, hypochondria, attention-seeking, yada yada, are never going to be convinced of anything else. The more we protest, the more they think we're fakers. Instead, we need to spread awareness that the illness affects the nervous system profoundly, and virtually every other body system as a consequence. We need to stop hiding our pain to try to fit in or protect loved ones. We also need to stop participating in pain competitions. With respect to the last point, what I mean is it is not helpful to compare your pain to that of anyone else because pain is ultimately subjective. I recently saw a post ranking pain due to CRPS as greater than any other cause. While I sympathise with anyone who has CRPS, I wonder how that ranking helps anybody. Anyone who lives with pain, or specialises in treating it, knows the more a person with chronic pain focuses on their discomfort, the greater and/or more distressing the pain becomes. My goal is to acknowledge my pain, accept it, deal with it as much as I can and refocus my attention on things that add positivity to my life.
With cases of long-covid rising, can you tell me how that makes you feel as someone who has had very similar symptoms for longer?
I sympathise with any person who lives with chronic pain and fatigue from any cause. Infectious illness has long been suspected to be a potential trigger/cause of fibromyalgia. Perhaps studies of COVID long-haulers will shed some light on this.
Can you describe Fibro in 5 words. In one word: shitty. For real now: persistent pervasive pain and fatigue.