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I feel any more nobody I live with listens to me
They seem to be making my MS is a joke to them, it hurts me.
I'll be honest, I bore myself when trying to explain my MS and no matter what I leave something out. After some time, I realized that even if I could explain what's happening to me, I'm reasonably sure the person I've trusted won't understand what I'm talking about and that fact sucks. With that said, I had to come to grips with my issues and realize that no one who doesn't have MS or my MS, that really limits the people I can talk to, can ever empathize with me and that fact, though it sucks, is one I had to live with. In time, it won't be isolating and you might even grow to look at MS as an advantage. Think about it, you make a mistake caused by our disease or not, you have an automatic get out of jail free card. You want a conversation to end, just say damn MS and see what happens. Know you can come here and vent away or use the MS society to find live people to help you. I understand but no one understands what you go through and you're going to have to look for your outlet
The problem with chronic illness is you rarely feel good so the answer to the how are you question is usually pretty negative, people get tired of hearing the reality and have zero understanding of our problems because they don't have it. It becomes a pointless exercise having conversations about it so i choose to keep my own confidence and not burden others with my troubles unless serious, it does make it a lonely journey but it's my burden to bear and strength CAN come from it, it's all about attitude.
@A MyMSTeam Member I hate to say this since it sounds so negative, but I totally agree with you. I've always gone out of my way to care for others and childishly assumed others operated similarly. Nothing like a good dose of MS symptoms to snap me back into reality! I am still thankful for my diagnosis though - it taught me how to separate the people I really need & want in my life from others that were just taking up space and energy. XX
@A MyMSTeam Member I hear ya! I was really struggling with this for a while. The miracle that helped my family was reading a book called 29 Gifts. The author has MS. It's short - yet very clearly explains her challenges when diagnosed with MS shortly after her wedding. It's a great autobiographical account of how she and her husband learned to live with the disease together. Very inspiring - and helped my main support team understand my invisible symptoms, ultimately allowing them to be more supportive and helpful. Good luck to you! XX
Im going throught the same thing!!! They always have a solution, and they belive the things they say.
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