Living with ME/CFS changed my life irrevocably, so much so that nothing felt the same any more. It has been an overwhelming loss of my identity as well as everything else the condition entails.
Adjusting to this loss of identity has been just as difficult as coping with all the symptoms and reduction in quality of life from ME/CFS itself. In some ways the fact that I’ve been able to identify this loss of identity means that finally I’ve moved on from focusing on a lot of the day-to-day symptoms. I have learnt after many struggles to carefully manage the condition and try not to give them more attention than necessary. So, I am aware of the symptoms, but not paralysed by them.
This change hasn’t happened in days and weeks, but over months and years. How have I got here? With a lot of struggle, attending managing ME/CFS courses, one-to-one support, a myriad of private therapies and reading many books. Ongoing family support has been invaluable and I am beyond grateful to them, some friends too have been stalwarts plus all the support and friendship from fellow sufferers and supporters of ME/CFS along the way.
Accepting my reality after a long time of battling against it has helped too. I was determined to get my life back to “normal”. In that, I have “failed”. Now I have my “new normal”, always working within my limitations. It has been a struggle to get here and there is not one particular method or treatment or system that I can give credit.
I still battle too with lots of things, but I try to learn from past mistakes, so that next time I have to do something, it is a bit easier. Perhaps I could have got here sooner, or never even lost my sense of identity, who knows? I know I felt a crushing sense of shame about having the condition and felt that I was to blame for my situation. That too has been difficult to come to terms with. Finding people who understand and who properly listen has helped.
It’s reduced my sense of shame and I don’t feel I have to hide away so much. Recently I reconnected with some old friends and have been open about my ME/CFS. This is something I avoided in the past. It has been so good too to reconnect with people and this has given me back some of my lost identity. I am feeling a bit more like me and things feel a bit more positive!
These conversations with old friends have made me feel more confident and that maybe I could experiment with trying some new things and see if life can open up and become more rewarding. Being properly listened to, feeling valued and making a connection has given me a boost. With some sustained effort my “new normal” might get better and better and who knows what could happen.
N.B. As always, what may work for one person may not be suitable for another person with ME/CFS, therefore people find way different ways to manage the condition that works for them personally.
Information
- Local Support Group Directory – list of independently run groups that are not affiliated to the MEA
- Booklet: Pacing: Energy and Activity Management
- Booklet: Management – Ten Key Aspects
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