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Have you ever noticed that white stringy part that comes out beside the yolk when you crack an egg? The white blobs are called a chalazae, and it's the kind of thing that typically no one likes to talk about.
For years, I often felt that my Multiple Sclerosis (MS) also fit into the category of things that no one liked to talk about. Conversations about my health felt uncomfortable to discuss.
My friends knew I had MS, but for the most part, no one asked about it. I had spent years learning about the stages of MS, the symptoms and myelin. I longed for someone to ask me how I was really doing or wanting to learn more about MS.
As the years passed, I knew my closest relationships were those where friends showed a genuine interest. They even offered to take me to appointments and have volunteered at fundraising events.
One night after facing a bad day of Lhermitte’s (sudden sensation resembling an electric shock running through your body1), my girlfriends helped me understand that others may not be asking because they simply don't know how. For some, it is an uncomfortable topic. Sometimes people are fearful of saying the wrong thing, so they just don't say anything at all. What I have learned is that the responsibility is on me. If I want to spread awareness or tell someone how I feel, then I need to take charge of that.
I now have a different relationship with my full circle of friends. It doesn't bother me if people do not ask me how I am doing. If I want to talk about my MS, then I will open up the conversation. I have also found some online groups of other people affected by MS and am involved with my local MS Society chapter. It's easier to talk about MS with other people who understand it. My advice is to make friends with other people that have MS.
There were times where I needed to cancel plans last minute; not because I wanted to, but because my body was telling me to. A true friend will understand this. It's possible you have friends that don’t understand why you are so lethargic or have symptoms. They may not understand because you were once in better health. They may think that MS is no big deal because they once knew someone who seemed fine. If you have friends that judge or do not want to understand your health challenges, then it may be time to evaluate your friends. I personally think it's fine to cleanse your life, and that includes people!
If I ever wanted to talk about that white part in a cracked egg, I would open that conversation also; I just have no interest in the chalazae. But MS....I can talk about for hours. Ask away!
MS Trust, Lhermitte's sign. Available at: https://mstrust.org.uk/a-z/lhermittes-sign. Accessed January 2021
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