I’m told 12th May is Fibromyalgia awareness day. It’s also the full moon, the flower moon, which is a collision of two important factors in my life.
It was only recently I was diagnosed with fibromyalgia (fibro), and it was like someone turned on a light which clarified so many memories of physical pain, exhaustion and anxiety.
So, what is fibromyalgia? Fibromyalgia pain is believed to be due to complex dysfunction throughout the nervous system (brain, spinal cord, and nerves). It is believed that pain signals are exaggerated by the brain and nerves, amplifying the sensation of pain experienced.
It is considered to be a chronic condition that causes widespread pain, discomfort, fatigue and sleep problems and cognitive impairment. And as a chronic condition, life with fibromyalgia is disabling and classed as a recognised disability.
Source – Very Well
Who does it affect? Anyone can develop fibromyalgia, but it’s more common in women than men and typically develops between the ages of 25 and 55.
Although it’s not clear how many people are affected by fibromyalgia, research suggests it could be common with some estimates suggesting nearly 1 in 20 people may be affected. It’s worth noting that symptoms vary from person to person in both severity and regularity which makes it particularly tricky to diagnose.
Source – NHS
How is it treated? There is no cure for fibromyalgia, but regular exercise, physiotherapy, healthy diet (including supplements), pain management techniques and medications may help relieve some of the symptoms.
Co morbid conditions. Fibromyalgia is often accompanied by other health conditions, referred to as comorbid conditions (Comorbid meaning conditions regularly found to coexist).
These can include mental health disorders like anxiety and depression, neurodivergence like adhd, autism and dyspraxia, digestive issues like irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) and even anaemia. Additionally, headaches, including migraines, and other chronic conditions like hypermobility, Ehlers Danlos syndrome and Postural Tachycardia Syndrome (POTS) can also be comorbid with fibromyalgia.
How to support someone with a chronic condition:
Open listening – regardless of being a colleague or friend, the first step is to practice open listening. This means receiving information and experiences without judgment or without even feeling the need to offer and opinion.
Respect their experiences – invisible illnesses and chronic conditions are often disbelieved and even questioned as legitimate, if you are committed to supporting someone, respecting their experiences is paramount.
Leave ablest norms at the door – a day in the office is a normal and fair expectation, right? Learning new skills is hard for ‘everyone’. It’s just a cold, carry on as normal…if these are words you live by you might want to consider how lucky you are. When a body experiences constant pain or discomfort, it will be burning more energy to counteract the pain signals and carry on. This is called masking and is a common, automatic through lived experiences, skill that disabled people foster to function in a society that doesn’t make space for their experiences as standard. In short, try not to assume that if someone is tired, they ‘just’ need to go to bed earlier. Try not to assume that things that are normal in your experience are the same for someone who is disabled.
If they are your friend, they might cancel plans last minute and more frequently – this is nothing to do with you. If they are your employee or colleague, consider how you can support their comfort – a specialist chair, a footrest, flexibility in working hours and location and even in workload. During a chronic illness flair up (flair up referring to a worsening of symptoms), they might need you to support them a bit more so that they can get back on their feet.
And a bit about the moon – well, about the power of rituals. The mental load of living with a chronic condition can be vast. You plan around it as much as you can, but sometimes you have to plan in advance and just hope for the best. Sometimes you manage to live your plans and sometimes they become impossible. Sometimes you push yourself enough to get through your plans, and then crash and pay for the energy you created from nowhere for twice as long as the occasion or experience.
I was diagnosed in early February, and like I mention earlier, it was as though a light illuminated a lot of my life. All the times that I had been exhausted or felt like I was broken, like I was lazy or generally put the onus on myself for not being able to function ‘normally’. Suddenly I had a reason and an enormous reason at that, but I also realised how little control I have over it – the illness, my body, my nervous system. It was scary.
One thing I have found powerful, is living less in the future. It’s not about being ‘present’ or appreciating the now, it’s more related to not holding on to things, not wasting energy on the things you can’t change or the people who misunderstood you.
Every month since March I have joined in with the Moon Mermaids, a group local to me, who meet on the beach, gather around a fire, and give up the negative or heavy things that are no longer serving them by writing down something they’ve struggled with and throwing the paper into the fire. We then wade into the cold water for a dip or a full-on swim – depending on personal preference – I am a dipper.
It’s a gentle ritual on a very simple level, that anyone can partake in to any degree.
I then sit on the beach, hot water bottle shoved up my jumper, hot chocolate in hand, and watch the sun fully set and the moon rise into glory.
Every month, I am overcome with a deep sense of not wanting to go.
Every month, I am so glad that I did.
It’s like a reset button and I emerge so much more able to leave behind the very real pain and discomfort of the last month, recharged and ready to face another 28 days or so.
If this is too spiritual, then find something else. But there are so many practises that look to nature for fresh starts, I would recommend something that involves the natural world. The power of ritual is profound, don’t underestimate how doing something marked for yourself can really help you through, good or bad, ritual is there for you.
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