Not Here to Inspire Anyone
Hi, this is my first post. I guess I'm here because I'm looking for a constructive way to deal with all the energy that I usually reserve for suicidal ideation.
Let me precurse this with the following: I am mostly well with being unwell. But sometimes this disease gets lonely.
I am a self-professed nihilist and misanthrope, and those parts of me hate that I am seeking connection, but, man, does it get dark in here sometimes. I think I have always had these antisocial tendencies (old angry art kids, amirite?) but somewhere along the way they have bloomed in all-consuming ways, and I think it's largely in part to people taking literally anything I say and putting an inspirational spin on it because of my disease.
I was scared to death when I got diagnosed back in 2015. My second kid was just born a couple of years prior. Losing my sight and then function in the left side of my body made it very difficult to run after a toddler who went straight from bum-scooting to walking. I didn't hide my diagnosis. In fact, going public with it made it feel so much less scary. It takes a village and all of that. But I think I shot myself in the foot with that because it made everyone in my life a part of my experience with it. I couldn't post about anything on my socials without people finding some kind of inspiration in it. I get that people don't know how to deal with sick people. I get that it's hard to watch people you love struggle and you want to encourage them so they don't give up.
I ended up getting so in my head about it that I deleted everything anyone could contact me on, and stopped sharing anything with anyone. I like to write. I make various types of art. Most of my stuff is pretty cryptic, so that usually gets left alone. But sometimes I am just overwhelmed with life (for better or worse) and I crave just laying it out there and being vulnerable (for better or worse).
I just wish the response was, "man, that's intense," instead of, "keep on keeping on, MS warrior," followed by some unsolicited advice (as if I don't do everything in my power to not let this thing best me).
I'm not here to inspire anyone. I just want to live and write about it sometimes.
I'm glad you reached out and shared this, thank you for doing that. Thank you for sharing it here. You wrote a line that stood out to me: "But I think I shot myself in the foot with that because it made everyone in my life a part of my experience with it." Sometimes even when people have the best intentions, they miss the mark. It makes total sense that you would want someone to just listen and validate your experience rather than offer an inspirational sentiment. Sometimes, it feels good to hear someone say "you know what, yeah, that is really intense" or "that sounds heavy. I want to be there for you. How can I be a supportive friend? Do you need me to just listen and support? Done." I think people sometimes need a reminder that just saying something like that, is really helpful in feeling seen, heard, and validated. You're definitely not alone in wishing that was the case. I wanted to ask, are you seeing a therapist or have someone to talk to that offers support? A lot of people in this community have mentioned that having someone outside of their everyday life to talk to has been helpful. I know it's not everyone's cup of tea but was curious if you have tried it and what your thoughts were. I hope you know that you are among people that understand here and are here to offer support. If you're ever in a crisis though and need immediate support, please don't hesitate to reach out to the folks at 988 (https://988helpline.org/). I'm really glad you posted, and hope to chat with you again soon. 🧡 Kayleigh, MultipleSclerosis.net team Hey! Thanks for the reply, and for such nice words. I ranted a little more than I intended to, but once I started writing it just came out. I do have a therapist I see regularly who specializes in MS patients, and I have a really good support system with my partner, family, friends, and med team. I am also very familiar with the local crisis line in my city, and use it more frequently than I should probably admit. But I will admit it, because I think it’s a hard but necessary topic. Thanks for listening to my rant without judgment. I have held off joining an MS community for years because I’ve never felt comfortable doing so, but I’ve read a few articles on here and everyone seems very authentic and real in their experiences.
Thanks again for reaching out.
We are grateful you found this community, and you feel comfortable sharing with us.
It's good to hear you have a wonderful support system.
Always know this community understands and is here for you. Reach out anytime.
~Doreen (Team Member)I know I said it before, but I'm really glad you found us and that you felt comfortable sharing how you felt. I think many people, myself included, related to your words. I think the amazing thing about that vulnerability is that we often find kinship through it, you know what I mean? It sounds like you have a great support system in place, ourselves included. I'm glad we'll be seeing you around in the community . 🧡 Kayleigh, MultipleSclerosis.net team
