You know that feeling you get when you have been vindicated …… Anyone who is living with a chronic disease understands what I mean. For years, we experience things that are unexplainable, yet so very real to us but the world doesn’t believe us. I believe it hurts most when the doctors who are supposed to give you help or answers don’t even believe you. Ever since my awareness about Myasthenia Gravis (MG) in my life, I have read so much about what others like me have been through and I understand their pain all too well. For years, I didn’t know what was wrong with me, so finally when I got my diagnosis, I breathed a sigh of relief because now everything seemed to make sense.
Why am I writing this today? Some hours ago, my sister sent me a link about Selma Blair, the actress who is living with Multiple Sclerosis (MS).
MS is also an autoimmune disease, but unlike MG, the immune system eats away at the protective covering (myelin sheath) of the nerves. The resulting nerve damage disrupts the communication between the brain and the body. Let me try to paint a picture for you: the myelin is like the insulation coating on electrical wires. When that covering is damaged, the nerve itself is exposed, so messages that travel along the nerve is slowed or blocked. And because the nerve is exposed, it can also get damaged.
MG and MS are quite similar because their symptoms involve muscle function. With MG, you have swallowing problems, slurred speech, drooping eyelid, blurred or double vision, or a change in facial appearance. You may also have weakness of the limb (arms and legs) that cause an unstable gait. However, with MS, you experience weakness along with other symptoms like numbness, “pins & needles”, tremors and dizziness.
So, back to my reason for writing this particular article – Selma Blair. As I watched the video and listened to her story, all I saw was tremendous strength and resilience. What really caught my attention was when she said she cried tears of relief after she got her diagnosis. From my experience as a medical doctor, I have only heard one person make this kind of statement after getting a diagnosis of a chronic disease. In my part of the world (West Africa), people tend to not accept a chronic disease diagnosis; and when they do, it is never with a sigh of relief.
Personally, I believe that it is better to know what is wrong with you so that you know how to manage the situation, rather than live in ignorance of what is happening. I also believe that the earlier you accept whatever situation you find yourself, the earlier you start to heal emotionally and psychologically, and the earlier you can move on with finding a way to live your life in spite of that diagnosis. But then again, what do I know? I have only been living with MG my whole life and only been aware of it for 5 years; and I can boldly say that knowing has made my life a whole lot easier. I now know how to better take care of myself. I pace myself and I do my best to avoid triggers so that I can live an almost normal life.
I encourage us to take a cue from Selma Blair: do not let a diagnosis keep you from living your life. Yes, you are allowed to be sad about it, or to feel whatever emotion you need to feel; my point is that you shouldn’t stay in that “place” for too long. Be resilient! Find others like you and open up to them because together you are stronger. Alone, a snowflake will melt, but a bunch of snowflakes can cause blizzard!We myasthenics like to refer to ourselves as snowflakes; we cannot make it alone, but together, we can make it through anything.
**This article was inspired by Selma Blair so I thought it best to honour her and use her photo as the featured image!
To read more about Selma Blair and to watch the video in which she shared her story, click the link below
To read more about Multiple Sclerosis (MS), click the link below
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