I was diagnosed very recently with RRMS. I’m in my 20s and am currently awaiting further MRI and DMT discussion etc.
I have struggling with anxiety, especially health anxiety for as long as I can remember but my main issue right now is feeling isolated. I consider myself to have a hidden disability amd I find it very difficult to explain. People dont react very well and either I have to reaasure them or they just go very quiet and distant. I also work in a very busy environment where people rotate constantly so no one I work with really knows because I wouldn’t know how to tell and I really dont know/trust anyone there. I also feel like I’m being judged when I space out because I get a random pains or worries.
Overall, I’m coping better than I thought I would and my MS team is amazing. I also have a really supportive partner.
Any advise on how to cope with lack of social support, feeling judged and rejected would be very much appreciated. From what I have seen it seems like a very supportive community which is reassuring.
Hello @Manta
I was initially dx RRMS when I was 19 I think? My multiple sclerosis was relatively quiescent, albeit with some relapses, for about 20 years.
It’s only become apparent now as I rely on using 2 walking aids, these days.
I preferred not to disclose the condition earlier on, a bit of a conversation killer.
If you feel well, then having multiple sclerosis is not really a problem imho.
I always like to think, I have MS but MS does not have me.
Stay strong,
JP
Guess for me was both a lot to take in as my aunt has MS as well made it so i had someone close to talk to about things but also made me fearful as seen how shes degraded over the years. Best thing i can suggest is try to find a local support group that you can talk to about things that worry you and any advice you might need. Helped me out a butt ton finding people who deal with the mobility issues.
I guess we are all different but for a short while I didn’t tell people. Looking back I think my attitude was one of unless it becomes apparent that I have a problem then I’m just going to carry on as normal. Once I had come to terms with the shock of diagnosis a bit more and had read up on MS and on what it meant in terms of employment etc I felt a lot more confident in telling people including my employers. I think that in part I took control of the discussions e.g I remember telling work colleagues in a very matter of fact way that over time they might begin to notice I have some problems with walking. I suppose I thought that I wasn’t going to let the diagnosis get the better of me and I was going to take control of what it meant for me, for work , for friends etc. Perhaps a slightly bolshy attitude but I think that part of me felt ‘OK I don’t want pity etc, I’m still me and I expect the same respect, friendship etc to continue’.
