Last reply 7 months ago

Does anyone else feel guilty about the grief they feel following diagnosis?

I know that I am incredibly lucky for so many reasons, to name a few being able to continue to work, being here in the UK where we have free healthcare and currently being in a really great place physically.

Whenever I do feel sad about this whole MS situation there’s this horrible voice inside my head that tells me that I’m ungreatful and I shouldn’t be upset about it because things could be SO much worse.

Am I alone in this? I feel like it is hindering me in being able to accept my diagnosis and take a more proactive approach to moving on.

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8 months ago

@laura94 , you have nothing to feel guilty about. You didn’t ask for MS and you didn’t go out of your way to acquire it.

Don’t confuse grief with guilt. We do have to handle the grief for what MS has taken from us.

So, be patient with yourself. It is still early days for you…………….

8 months ago

Hello @laura94, I can relate to everything you’ve said. I think that this is probably a normal part of the process. You mustn’t judge yourself. You’re right, there are people worse off, we are relatively fortunate in relation to where other people are. But there’s no shame in feeling how we feel. You haven’t been diagnosed that long, so you are still trying to balance everything; feelings, emotions, feeling unwell, working, trying to be normal. Maybe worrying about the future. And you need to feel those things. But equally, you need to find a way to lift yourself out of those times and focus on the positives in your life. Sorry I don’t have any good advice to give, hopefully others will chip in. But stay strong, it sounds like you’re doing great to me! X

8 months ago

Thank you both for being so kind! It is really helpful having access to this community and the amazing, brave and compassionate people in it.

8 months ago

The problem is, telling someone to not feel guilty has an opposite effect most of the time. Like Stumbler and Vixen have said you are still quite freshly diagnosed, this will take time for you to adjust.

When I was first diagnosed I felt lost and I was a bit of a pushover nice guy who couldn’t say no to anyone because I felt guilty. I was still in high school when I was diagnosed and it was hard for me, mostly due to being a teenager and still figuring out what I wanted and what I could be after MS.

I pretended everything was ok because I felt guilty and I didnt want my friends of family worrying about me.

When I couldn’t do something for someone, I felt guilty when I wasnt there to help someone. I felt guilty I was the lucky one who recovered from my MS symptoms even after my I met a few others who weren’t as lucky as me and didn’t recover.

At the end of the day we all have our own paths and we have to all accept that. I still have a lot of empathy for people around me. But I don’t feel guilty for the things that happen out of my control. This is something that is just learnt over time.

my advice is dont do anything for the sake of not feeling guilty, do it because you want to do it. I’m not a fan of anti depressants, I would rather be sad and find out why I feel that way because I feel like that’s what makes me understand myself better and makes me a stronger person.

MS takes away your choices and that can be a terrible thing, but I urge you to not feel guilty about feeling sad let yourself process. it is very important you give yourself sometime to deal otherwise you will be letting MS dictate your life.

I hope this helps


7 months ago

Hi @ laura94 from one f the old codgers. Do not feel guilty, as Stumbler said you didn’t ask for it! I’ve just come off Avonex myself, I was on the original trial 25 years ago and it only stopped working 18 mths ago and they told me rrms would become spms in 10-15 years and it took 23 so believe me there is hope. You are young and have a DMT straight away so there shouldn’t be a problem. I’ve been swapped to Tecfidera and all seems ok. I’ve had 23 years on my feet, am still there occasionally which I don’t think is bad at 62 ! So no more guilty feelings, you need to grieve, get it over and done with and get on with your life. Good luck😍

7 months ago

@laura94 You’re not alone! I had nearly 40 years between relapses, diagnosed this year at age 57. So I constantly remind myself that I cannot complain or feel bad because it could be so much worse. Even if I have more relapses in the future, I still have all that time behind me which was relapse-free. Still getting used to the idea of this situation.

7 months ago

Its part of the process but don’t feel bad or guilty, and as @stumbler says, its grief. Ask for help, that in itself can be difficult, but it is worth it. Grieve for what you now don’t do and ask for help when you need it, you will feel better about things.

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