by
Deanne Phillips
My name is Deanne Phillips and I have Myasthenia Gravis. Myasthenia Gravis (MG) is an autoimmune condition which means grave muscle weakness. It affects the eyes which is known as Ocular MG or general MG, and that affects the whole body.
My diagnosis of MG in 2014 was a relief and a life changer. My initial diagnosis of Ocular MG meant that only my eyes were affected mostly, but my body was tired; however, it soon progressed into General MG where my entire body was affected. For years after my initial diagnosis, I didn’t want to let go of my way of living as I wasn’t willing to accept that I could no longer live the life I was accustomed to. I believed that if I lived my life as normal then it would be okay, but I was very wrong. I had to learn that though I had limitations, there were still things I could do as long as I paced myself, and the days I did nothing because my body needed it, I wasn’t being lazy; I was just ensuring that I could continue fighting.
MG doesn’t only affect my health but all aspects of my life – my relationships, my family, my job, and my social life, as my body was adjusting. I lost jobs due to MG or wasn’t hired because I have a chronic condition. It didn’t matter that I was qualified or that I would’ve done
the job to the best of my ability. I was seen as a liability. I currently work at the Queen Elizabeth Hospital part-time and hope to someday become full-time. It affected my school life as the more subjects I did the harder it was on my body and I sometimes ended up hospitalised, but as long as I paced myself, I was good, even though it meant finishing school in a longer time frame than expected.
My family is also affected because when I am hospitalised, they are the ones who have to make the trek to and from the hospital or spend hours in the Accident & Emergency Department whilst I’m a patient. Though they don’t complain, I know it is hard on them as they still have to work and continue their everyday lives. I thank God for my mother and sister as they are my rock.
My relationships and friendships were affected because they were accustomed to seeing me as an outgoing person and many of them didn’t understand that my body now has limitations. There are still many persons who think I use my illness as an excuse, and that hurts. Also, not many people can deal with seeing someone they love or care about lying in a bed unable to help or do anything to make them feel better.
For so many years I struggled with the person I was, but could no longer be. I struggled to find that balance where I could still be me and not feel as if I was trapped in my own body. I cried so many tears at the way I felt my life may have to be, but the one thing I knew was I am fighter and I refuse to give up!
MG gave me a healthier appreciation for life as I was taking people and things
for granted, but now, I am learning to take it one day at a time and enjoy life and all that it may bring. I am starting to realise and believe that all I want is coming my way, no matter how slowly, and that this condition I have can be used for good – to raise awareness for those who have this condition and to those who don’t know about the condition. In doing this I hope to give someone the power to never give up, no matter how hard the road may be. There is light at the end of the tunnel.
I HAVE MG, BUT MG DOES NOT HAVE
ME!!!
