Accepting my life with Fibromyalgia

Chronic illness is a core part of me now and I can't heal physically or emotionally without sharing who I am. ( Blog link)

THIS is why I love blogs, and the people I have now formed mental links with because I read their words and feel that they understand who I am.

Counting my spoons is a blog that has kept me going the last year or so when I needed inspiration. This week that blog shared a piece written by Chronic Mom about Coming Out of the Chronic Illness Closet. She talked about how difficult it is knowing when to tell people that you have a chronic illness. This was one of the hardest things for me in my acceptance yet as she says it was a core part of me now and I needed to share who I am.

I always lived a very personal life, in many aspects I was an open book on social networks but I always told people what I wanted them to know. Hiding depression was easy I have done it all of my life. I often even hid it from myself and start to believe that I am not depressed. Like an alcoholic in recovery I know it is always part of me.

I never take it for granted that I am blessed by my past careers. A Nursing background has given me the confidence to take control of my own care and understand the terminology used by multidisciplinary teams. Being a complementary therapist has gifted me with the skills to combine conventional medicine with a holistic approach. Being a writer has given me the gift to record my mind and share my smiles with others. Buddhism and spiritual self-healing were how I coped. Throwing myself into what the CBT Counsellor called a crutch to hide my condition. This was the key moment when I knew CBT was not for me. She called it a crutch; to me it was the bridge to happiness, so not to be viewed negatively.

I had to create a set of coping mechanisms to ensure my day was filled with happiness so I could smile and get giddily excited about the small beautiful things in my life. I still do this now, by filling my world with rainbows.

The first year of my diagnosis with Fibromyalgia and Chronic Fatigue Syndrome was the hardest for me as I was still very much in the closet. Layer by layer I very slowly revealed who I am.

There is no point coming out of the closet if I did not even know who I was. First I had to teach myself who I was. I had to understand my illness, how it affected me and become friends with the new me. Grieving for the old me was such a difficult process.

The old me had many friends, well I will use that term loosely as many were associates, network acquaintances, frenemies. You lose many friends when you have a chronic illness, I now look upon that period as a detox. Some I could no longer tolerate, some disappeared on their own free will, some became very bitchy, and I simply did not need that in my life. For some, I was no longer the person they thought I was and new me was surplus to their requirements of our friendship.

Through my illness I found that real friends are truthful friends, honest but not rude and hurtful, real friends are always willing to listen, real friends are genuine with their affection, most importantly real friends are those that can truly share your happiness, sadness and successes in life without jealousy and resentment. I now have a small handful of these people. Some are people that know me so well and some are people that have become true friends via a social network, the friends you adore and yet have never met.

I came out of the closet, warts and all and I value with all my heart the people that remained in my life. I communicated with my friends via Facebook. I could be in my safety zone with my boys and yet have conversations with my friends. As I began to accept chronic illness I found I associated more with people on Twitter, there is a massive community of spoonies on twitter from all around the world.

Some of the most comforting words in the universe are “me too.” That moment when you find out that your struggle is also someone else’s struggle, that you’re not alone, and that others have been down the same road." — Unknown

For a long time I felt I could be me on twitter, on my facebook profile I was still the old me. Eventually, I deleted my account on facebook and now have only my blog “like” page. To go from a profile of 4k friends as the old me to now have a handful of regular friends who like and comment is refreshing. As painful as opening the closet door can be, you realise who your real people are. Over time, I will probably make a new personal page and remember who the friends were, the ones who stayed.

As humans we often advocate coming out of your comfort zone, colouring outside of the lines and flying free with your own wings. Chronic illness clips your wings and you retreat into a cave of comfort.

In all fairness, I am forty-three and I am in no immediate rush to form new friendships that I will have to out myself too. I have laid my cards on the table to people and said this is me.

So my view the key to coming out of the closet is learning to love yourself and the new you first then tap dance out of the closet in style. If people do not like the new you, that is their loss.

“You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches,” ― Dita Von Teese

 Love and gentle hugs to you all


  1. Still struggling to find the new version of me to love and am really happy in the closet. I feel safe and secure in my flat. I don't enjoy going out at this time and I know that isn't a healthy place to be. So where is my compromise ??

    1. Kelly, I am no social butterfly at all, Harry the Hermit me. You do it at your own pace (if at all) Home is the safest place in the world for me also xxx

  2. So glad I found your blog, Ness. I’m heartened by reading this particular entry, and love your use of the ‘closet’ analogy. I haven’t quite managed to ‘go public’ and reveal myself as a person with fibromyalgia to the world yet, though I’m getting there. I shared a blog with my family and friends detailing what fibromyalgia feels like to me and in doing so I experienced relief and deep sadness in equal measure. Thanks so much for the blog, and for being you. X


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