International day of people with disabilities 2020 is on the 3rd of December. In honour of this, and considering the added complications and difficulties COVID 19 is placing on everyone, I felt the need to tell you my story as I’m sure there will be many who will be able to relate to this.
I’m 54 years old with Limb Girdle Muscular Dystrophy, whilst I have been diagnosed with this there is still some uncertainty whether it is 100% what I have and have been told I may never really know.
The devastating news was given to me, when I decided to go private to speed up the agonising wait of knowing what was happening to me. From a fairly young age I had always believed I was different and something wasn’t right, I was extremely out of breath and would trip up a lot as well as being in a lot of pain and could never put my finger on it, as to why and where this was coming from.
Up to 2014, I was completely unaware I had this very rare genetic disease, that very few people have heard of including myself. I had led a normal life, going to school, college, working abroad and building up a career then raising three gorgeous children as a single mum. This is when I felt the decline more prominent as rigorous tests and a muscle biopsy were accelerated to come to this conclusion. No-one else in my family has it, so as you can imagine it came as a shock, as I sat with my mum in the consultant’s office. I had thought it would be a back problem that could have been repaired over time. I was not prepared in any way for the news I was given, a slow declining muscle wasting disease to which there is of yet no cure to stop or slow the disease and the prospect I could one day be in a wheelchair. My muscle weakness is predominantly in my hips, shoulders and sadly my diaphragm which means I sleep with a ventilator every night to assist me with my breathing as it weakens when I’m lying down. I even found it difficult to read stories to my children in bed when lying down as I couldn’t talk and breathe at the same time.
2020, I am still going to counselling and in extreme pain, resulting now to wearing morphine patches which in turn can have horrible side effects. The future of my mobility is looking bleaker as my muscles weaken and my mobility is getting tougher. More and more choices are taken away from me, I am an extremely independent person. This doesn’t just have an impact on me physically but also mentally as my path in life has dramatically changed. I cannot do the things with my 9-year-old daughter that I could do with my now 17-year-old. This often leaves me feeling frustrated and a failure. I often feel worthless and undervalued as a human being.
I have an invisible disability and am one of many people who have disabilities which are invisible, looking at me would you imagine me having a disability?
You cannot see the pain and anguish hidden within this person, it is important for us all to think twice on how we treat our fellow human beings as we all don’t know each other’s stories and that’s the reason why I’ve told you mine, it doesn’t end here…
Because of my breathing restrictions, I have been given a lanyard as shown in my photo, to show that I am exempt from wearing a mask. However, I have decided to continue wearing a mask because of how unkind people have been towards me, both verbally and by looks given to me. I cannot tell you how sad this makes me feel. I have felt this feeling for a long time, as I get the same response as a disabled card holder when parking in a disabled space. I now have a sign on my car which says ‘not all disabilities are visible’.
During a break from lockdown when wearing my lanyard in a shop in Norfolk, not locally I’m pleased to say, the lady behind the counter shouted to me “where is your mask?” I replied, “I don’t need to wear one, I have a lanyard on.” She replied, “anyone could be wearing one of those!” At this point everyone in the shop was looking at me. In my embarrassment and humiliation, I replied “I have muscular dystrophy and now everyone knows.”
I know as a society people are generally very kind and we are all going through very difficult times. At the moment it can feel especially hard knowing how to help people, if you see someone needing assistance you may want to help, but by helping we may also be spreading the disease. Sometimes though, a kind word may be all that person needs.
I would like to think I am a kind and caring person, and quite often when you have suffered pain and grief like I have, you have more of an empathy for other people’s pain. Because of this, I have become a member of a group called Speak up as part of Wiltshire CIL (Wiltshire Centre for Independent Living) who look at areas to improve the lives of people with disabilities. If you feel strongly that you would like to be a part of this team, you will be warmly welcomed. Please contact us on: firstname.lastname@example.org