Last reply 4 months ago

I feel so alone. I hate that I have nobody supportive to talk to. My own mother isn’t even supportive. I want my life before MS back. Sorry. I just needed to vent. I was going to a support group, the only one in my area, it was once every other month until it switched days, but now I can’t go on the new day due to a family commitment. I literally have nobody.

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4 months ago

Hi Heidi 31,

My son has RRMS, diagnosed last July. Although I cannot understand what your going through I am available for chats. I live in the Bristol area. Is that anywhere near you?


4 months ago

Hi Heidi, I have RRMS and some days I feel very alone. No one I know has ms so sometimes feel like no one understands how I am feeling and the pain I am in but this is why I come on this site it has helped me alot over the years talking to different people and getting advice, please feel free to message me for a chat.
Emma x

4 months ago

Hi @heidi31 , it is a common emotion, to feel that you’re the only one going through this. It can be an invisible condition, so unless we all started wearing badges or T-shirts, we wouldn’t know who else has the problem. There could be someone with MS living next door and you wouldn’t necessarily know it.

Support groups aren’t everyone’s thing. It does tend to favour the older demographic, which is one of the reasons that Shift.MS was founded. To provide support to the millenials and younger, who are more comfortable in cyberspace.

We all want our old life back. But, even back then, we didn’t know what the future held. Nothing’s changed.

Feel free to ask questions, add comments or just vent your frustrations.

4 months ago

Hi Heidi

I know what you are going through, I’ve had RRMS since 2009. It can feel very lonely as family try to support but do not understand. I cannot attend any local groups as I work when they are held. I have made friends on here which is lovely as it is a support. Message me if you want. Stay strong x

Hi Heidi

Ms should be called the lonely disease as it can completely isolate us at times.I do have an amazing network of support but even though I have this, I still feel lonely as I think they don’t really understand, only other people with Ms know what you mean when you discuss your symptoms,

like all of the above I am available to chat if you need too.

keep going #warriorsister


4 months ago

Hi I’m Lisa I was diagnosed with MS at age 52 and yes most family friends dont understand untill they have this gross ugly disease……… I have a sister she was diagnosed at age 22 she is now 64 and is bedridden with 2 nurses am/pm I’m sorry for your loneliness find a Hobbie or possibly write in Journal it’s not easy being sick !!! Wish the Best stay strong play music that always helps feel free to post here we will listen talk cry with you talk soon Lisa ⚘

4 months ago

Ah I am with you There Heidi….the MiserableSymptoms….Try as you can, theres no getting away from this loneliness/good grief feeling at times…..but do you know what…….WE DO….As someone else said….Be Strong….Please….Red

4 months ago

@stumbler I’m disappointed you said this site is ‘for millennials and younger’. I am new to I am 65 and have had PPMS since I was 48 the last 10 years living a wheelchair life. I joined because I think I can offer support to people living with all forms of the disease, having the knowledge that comes with age and experience. My age doesn’t mean I can’t empathise. I hope that no one here would think my age a barrier.

@heidi31 of course you want your life back so do I. I grieve for it constantly. But I’m learning how to banish those thoughts from my mind. Try the Support group, you may find it really helpful and that it’s the right thing for you. You could also try a support forum on Facebook called ‘Women with MS’ , they are kind and supportive people. Good luck!

4 months ago

@belinda_castle_1 , you are more than welcome on this Forum. I was referring to the origins of the Forum, not the membership criteria.

I, myself am 63 years old and have been a member here almost from inception.

So, please feel included. Yes, there are quite a few “youngsters” here, but they benefit enormously from the experience and advice from the “more mature” members. 😉

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