Musings

Living with an Invisible Illness

This is a bit of a stream of consciousness so bear with me. On Saturday Lady Gaga announced the cancellation of her European tour as a result of the pain of fibromyalgia. The news of her fibromyalgia broke last autumn with the release of her documentary on Netflix.

This really got me thinking about the reality of living with an invisible illness.

People with fibromyalgia often look really well… appearance is no indication of how much pain or exhaustion an individual might be experiencing. Fibromyalgia is characterised by unexplained pain all over the body, and often debilitating fatigue. For years I hid the extent of my condition from colleagues, family and friends. It was just too difficult to explain that I may look ok but the reality is a never ending struggle of pain and tiredness!

That is how it has felt for me for the past twenty years. When you can’t figure out how to make it stop, and the doctors tell you there is no cure, what do you do?

(By the way, I highly recommend Jennifer Brea’s TED talk for an insight into this. Check out my blog post as well with details of what has worked for me throughout my journey).

From what I understand, Myalgic Encephalitis (ME), Chronic Fatigue Syndrome (CFS) and Fibromyalgia are all on a similar spectrum and have varying degrees of overlapping symptoms. I have fibromyalgia and CFS. This is characterised by alternating phases of exhaustion, where I have more CFS symptoms, and other fibromyalgia phases, where there is a lot of pain on top of the exhaustion.

It is unpredictable and each day is different.

The reality is that planning your life is really difficult, as you never know what symptoms each day will bring. Pushing through these symptoms leads to further debilitation and the cycle goes on and on. The physical and psychological suffering is hard to explain – it can be devastating.

In her press release about her tour cancellation, Lady Gaga puts it so well. She says

“I use the word ‘suffer’ not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn’t be further from the truth. I’m a fighter. I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life….”

I applaud her courage and honesty in sharing this with the world. It is so important that people share their stories of these illnesses. So many of us are locked away from the world unable to function, or are just too embarrassed to speak up as there is a huge stigma around the illness. We need a voice.

Jennifer Brea is another brave individual sharing her story, and who captures the plight of other sufferers all over the world in her documentary Unrest.  She shows the despair of living with ME by documenting her own journey, from onset of symptoms to diagnosis. From her bed she sets out to show the reality of other sufferers whose lives have been devastated by the disease. Hearing the stories of the people she connects with is truly heart-breaking but so necessary to help raise awareness of the reality of living with ME/CFS. She shows great courage and honesty as she battles to come to terms with her diagnosis and what her future may hold.

The film is being used to create a global movement, campaigning for more research funding and awareness of the condition. It is estimated that 15-30 million worldwide have ME and the medical community knows precious little about it.

Brea succeeds in leaving the viewer with a sense of hope built on her optimism, honesty and ultimately activism. She has connected a community of sufferers in a way I have never seen before. I highly recommend it!

I want to end this post with optimism, as both Lady Gaga and Jennifer Brea have inspired me to communicate my own positivity today. I am feeling better than I have in many years and this is down to finding a lifestyle that works for me.

This was inspired by a 6 month crash starting November 2016 and a period of being bed bound. I started this blog from my bed to help keep me going mentally: I wanted some sort of life back!

I have identified some of my triggers and reduced the severity of my symptoms with the help of a CFS recovery programme, nutrition and lately gentle yoga amongst other things. I hope that sharing some of what I have learned will help others to start on a similar journey. If this blog inspires just one person that would be fantastic!

Finally, a gentle reminder to anyone reading this who knows someone with fibromyalgia… please don’t judge a book by its cover. Just because we don’t look sick doesn’t mean we are not.

Fibro warriors are used to putting on a brave face. In fact we are experts at it! 😊