Recently Lady Gaga bravely shared her struggle with fibromyalgia and painted the picture of exactly how tough life is when you're battling chronic pain daily, unfortunately she is not alone. Everyone who suffers with fibromyalgia has their own unique story to tell, detailing how it all began, how life has changed and recalling the stigma from others due to this invisible illness. Here I share my own story of how my fight with fibromyalgia began and how much my life has changed as a result.
When I think back I can pinpoint the exact time when I began to develop fibromyalgia symptoms. November 2015 about 6 weeks after having my youngest son is when my unusual symptoms began. I started to get pain throughout my body for no reason, I had widespread stiffness and felt exhausted all the time (and not just because I had a newborn baby at home). I went to my GP only to be fobbed off and refused further investigations as I'd recently given birth. However my symptoms got worse and continued to affect me on a daily basis during 2016. Various doctors gave me a number of probable causes for my symptoms the most common were being told I'm too fat and need to lose weight, being told that my pains were 'wear and tear' from ageing (I was 34 at the time so I highly doubted that!), nerve damage from pregnancy and after effects from having an epidural and spinal block during labour. I began to wonder if my symptoms were fibromyalgia as a friend of mine had similar symptoms a year or two before I developed them. However I was told by my GP to 'not be so ridiculous!'. Charming eh.
After refusing to take no for an answer I continued to argue my case for further investigation. During 2016, my legs started to give way randomly and there were many times I'd be either sat or laid on the floor in tears as I could not move from the waist down and did not know why, which was not good with a baby and 3 year old child in my company. I'd call my husband and ask him to come home from work to help me however I knew it was not fair on my husband and I could not keep asking him to come home whenever this happened. This fuelled my determination to find out what the hell was happening to me.
I was eventually referred to the pain clinic where I was initially told I had nerve damage from the epidural during the recent birth of my son. Following a physical examination I was told my symptoms were psychological and there was nothing physically wrong with me even though I was in tears with pain throughout the physical examination as pain was travelling through my body. After this I was left feeling like a fraud and looking like a liar. Not one to give up I went back to my GP only to be referred for physiotherapy which only made my pain much worse and resulted in my mobility being affected making me as supple as the tin man!
After over a year of persistence, extensive blood tests, physical examinations and referrals to other health professionals my GP finally told me I had Fibromyalgia in March 2017. I was relieved to finally find out exactly what was wrong with me however I had no idea how much my life and many things about me were about to change.
My pain got a lot worse and now I have pain throughout my body, physical soreness and fatigue on a daily basis, but don't get me wrong some days are better than others. On my 'good pain days' I have to gage what I can realistically do before crashing and needing rest. This can be frustrating for my family and friends especially when I need to cancel plans or need my husband to stay in to help me instead of going to the match with his mates.
Unfortunately it's inevitable that fibromyalgia sufferers will encounter lots of stigma, judgement and unhelpful small-minded views from other people; sadly sometimes these views do come from people who are closest to us ,which can really sting. We're often told 'you don't look ill', 'cheer up' or 'at least you're not dying!' These kind of remarks are extremely unhelpful and on the whole do not bring any comfort, relief or soothe our pain in any way. I have come up against a lot of confused faces when I try to explain fibromyalgia to other people. The fact that my illness is invisible seems to baffle lots of people, which results in the sympathetic looks and the 'poor you' head tilt, which winds me up so much!
Since I was diagnosed I had a mixed response from people in my life. My workplace was where I received the most care and stigma in relation to my illness. I had colleagues who wanted to wrap me up in cotton wool and look after me, people who were telling me I was great at my job and gave me so much praise for still coming into work but I also had people who treated me like a problem, spoke to me like I'm an inconvenience who needed to be removed from my post and did not know how to accommodate my needs. I remember over hearing some colleagues talk about how fibromyalgia is a 'fashionable, make-believe illness', which sums up how misinformed people are about fibromyalgia and other invisible illnesses.
Thanks to Lady Gaga speaking up fibromyalgia and chronic pain briefly became a focal point within the media, I hope that people will educate themselves on invisible illness before judging fellow warriors who are trying to get through the day.