Keeping MS a secret - coping strategies
Hi all, I've had MS for just over 2 years and I feel my life is at a road block. I'm after some coping strategies as every so often I feel anxious, overwhelmed and like I have no where to turn to pick myself back up. Sometimes I am in denial as I haven't shared the news very widely (except with a few people) and I don't really talk about it. Some might think I should be grateful that I can hide my MS symptoms - this is true and don't get me wrong, I am grateful the disease is currently at bay. But the secret feels like a huge burden however when I have told a few people it didn't really help. I have moments of frustration, exhausan and fatigue - no doubt huge anxiety too as I can't always keep up with my kids. My husband has bigger denial than me and didn't want to talk about it at all (fear) for the first year or more - now he is starting to try with support. I have always been very private but I am sensing keeping this mostly to myself is going to cause depression (has caused on occasions) and limit the full life on offer with MS. I know that if I did tell everyone I would get many mixed reactions, some that would be very opposed to taking MS drugs, others would fear the possible genetic connect to the disease, others wouldn't know what to say and some that would be sincerely sorry to hear but ultimately would get on with their lives. I'm not sure if telling would really help me and equally I'm not sure if keeping it secret is that good either.... Does anyone have any helpful ideas to consider - I'm just brainstorming my options to feel connected, supported and on a positive path... Ps Psychologists are fine but it can get expensive. I'd prefer a day to day life copying strategy.
Hello to you on the other side of the world! Sorry you're having to feel like this. I think the most common thing people on this site seem to say and feel, is that other people just can't understand how it feels to have MS. It's not helped by the fact that you, me and all the other recently diagnosed probably can't work out how we feel about our own diagnoses either. I haven't gone public with the 'announcement' at the moment. But, what I've found is that when I have told some close friends, there seems to follow a bit of a silence which has really surprised me. I think people just don't know how to react. I'm mean, it's not like I've told them I'm going to die. Or that I'm ill, but that I'm going to recover. We ourselves don't know how the disease is going to pan out, nothing is predictable. So I guess if the disease is a mystery, then there are no set rules around how to handle it. You're right, it is a burden. The problem for us, is that it's hard for us not to be identified by our MS, rather than as a person. I'm trying to work on how to be myself, with my own identify, with MS as a mere add-on, instead of being the thing that defines me. But that's tough, right? Are you able to get access to counselling? As a long term thing, it might be that you could go less frequently, but consistently. Anxiety it such a tough thing to deal with. It's a double-edged sword for us too, because we know that stress has a real affect on our MS. I'm afraid I don't have any magic solutions. But, it's the middle of the night here in the U.K., and I'm writing because I know and care about how you feel. Be strong @staying-connected. Draw on your reserves, Keep positive by keeping an eye on all the latest developments with research. And don't give up on being true to who you are. Because that doesn't disappear just because of this ridiculous condition. Lots of love x
Hi @staying-connected, I think my view is different from most. I tell everyone. I'm either on a scooter or in a wh/ch so it's obvious that something is wrong and I prefer to be open about it...it makes it less stressful for me- and ultimately for them too as they assume they can talk about it - there is no 'elephant in the room'. I don't dwell on it either; mainly I carry on as usual and so do they, once they know what's up. Whatever you feel will cause you personally least stress is right for you. I hope this helps....xx