Like many of my clients, I have sometimes been faced with considering my own identity. Although I largely appear healthy and well, the diagnosis of Fibromyalgia Syndrome, Myofascial Pain Syndrome and Chronic Fatigue Syndrome, in 2015, has certainly challenged my perception of myself and has tested every aspect of my life. So, when I work with clients who face re-evaluating themselves or who live with chronic illness, I have a great deal of insight and understanding into how this can affect people.
Update: Since writing this Blog post, my former diagnosis in 2015 has been changed. I have, as of June 27th 2017, now conclusively been diagnosed with Young Onset Parkinson’s Disease.
I was yet again thrust into a process of self-evaluation, just last week; when I opened my post to find my Disabled ‘Blue Badge’ had arrived. I am used to other people not seeing my illnesses; for I still work, still study and still do my best to lead a full life. I do not necessarily look unwell; although I do now have to use a walking stick, for walking any distance is both painful and challenging. The worst of my symptoms are managed as well as possible and are rarely seen by those outside of my immediate circle of friends and family.
Yet, with all of this self-awareness about the serious nature of my illnesses, I still found myself shocked and somewhat reeling from the reality of my photo and my name being displayed on a Disabled ‘Blue Badge’; which offers me access to helpful parking schemes and regulations in order that my disability does not stop me doing what I need or going where I need to go.
My reaction surprised me; I felt rather choked up, I felt a sense of incredulity and, although I felt relieved at the help this badge offers, I found myself staggered at the extent of my illnesses; for I have truly become disabled.
Me. Disabled. How did that happen? Well, it has happened. Suddenly, just owning that fact and allowing it to filter into my sense of myself; my identity, I recognised that I had not adapted myself fully to my new reality. I am happy to push myself and to continue to fight to be active. I never want to change that, but I also realised that many aspects of how I live my life were becoming counter-productive and that I needed to make some changes that better respect my illnesses and that would better serve me in looking after myself as someone who does suffer from very painful conditions.
Sometimes, no matter how much you believe you are doing what is best and what is right, it is not until you are faced with hard evidence; in my case the arrival of a Disabled ‘Blue Badge’, that you can fully appreciate the size of a challenge that you face. Sometimes, you have to re-assess your identity before you can fully know how best to live.
I am still me but, while I have happily given everyone a positive image of how well I cope and how well I can be, I also need to allow myself to be okay with the ‘disabled’ title. If I dismiss this significant element of who I now am, I will do myself a disservice and may miss the opportunity to look after myself at times when I need to make that a priority. I also need to let people know that this is part of who I am. If I do not share this, then how will people truly know me; for my disabilities have become a major aspect of my life. They are relatively hidden and so unless I let people know, they will not understand when I say that I cannot walk to that place, lift that box, rush in that activity or join in with this or that.
If you have a similar experience, please do leave a comment and tell your story; for that may help others. Becoming disabled is not easy. Sharing this life challenge can be helpful. Hidden disabilities are just that; not visible to others. Raising awareness of disability is important.