Isolation and MS
I recently noticed that I feel very isolated since my diagnosis, does anyone else feel this way and how do you cope with it? I mostly noticed because I think I have a relapse starting, maybe? But I have nobody to talk to about it. I'm freshly diagnosed (after 2 years of fighting for doctors to run the tests) so I feel kind of clueless but also incredibly isolated. I used to talk to my family about it but learned quickly that either 1) they don't really want to hear it because it makes them think about their mortality or 2) they somehow turn it around to talk about themselves with the "oh yeah, I've been really tired with work lately" or "I had restless leg syndrome in college so I totally get it" type conversations and it's just UGH.
I know for a fact that you're not alone in how you are feeling,
. It can be hard to feel seen and heard when you are the only one dealing with MS in your circle of friends and family. As much as they may try to understand, they can't truly get it. And, even their attempts to understand ("Oh! I get so tired, too!" or "I sometimes get muscle cramps from exercise, so I understand your MS muscle cramps and spasms!"😉 fall flat and don't really help, do they?
Sometimes, the reality of living with a chronic condition like MS is too much for others to take.
All that said, it's not helpful when you feel alone. This piece I am linking is advice for friends and family, but I thought you might still find the piece (and the comments from members following the article) relatable -- https://multiplesclerosis.net/living-with-ms/advice-for-family-and-friends. And, I personally like this honest essay from one of our contributors about trying to build a support system -- https://multiplesclerosis.net/living-with-ms/friendship-support. I realize article links won't really help you feel less alone, but please know this community is here 24/7 and you will never have to explain yourself or not share the nitty gritty details of your MS. I know online support is not the same as support in your day-to-day life, but please know we're here. If you need to vent or just feel heard.
Best, Erin, MultipleSclerosis.net Team Member.Also, being newly diagnosed can be such an overwhelming time,
! It's a lot to take in and even if there's a sense of relief to finally have a firm diagnosis, it can be scary, too.
I wanted to share a couple of pieces on being newly diagnosed that have some great tips -- https://multiplesclerosis.net/living-with-ms/things-know-newly-diagnosed and -- https://multiplesclerosis.net/living-with-ms/5-pieces-of-advice-for-the-newly-diagnosed. Apologies for the article overwhelm from me, but I just want you to know that we're here for you!
Best, Erin, MultipleSclerosis.net Team MemberWelcome to this online community. I have had similar experiences with the medical community as well as not being able to get care due to homelessness and lack of funds. I have two adult children whom I informed about my diagnosis. Everyone else is not worth my effort since they are not part of my daily life. Sometimes I get their support and understanding, other times not so much. I hope that you continue to be an active part of this community. I find the support and understanding reassuring and validating.
I to found isolation to be my new life even now I rather be alone then in a room we're I'm so self conscious about myself. Trying to hide behind my fake smile.
I just recently wrote an article that answers your question. You might find it useful:
https://mshazybrain.com/ms-and-loneliness-building-a-supportive-network-and-combatting-isolation/
Let me know if it helps!
All the best,
Mshazybrain
