Last reply 5 months ago
Hello! Communication problems.

Hi Everyone. I’ve had this page for about 3-4 months but starting to get the hang of it. I’m still trying to get used to the fact that I have MS adjusting to some things in life but I find that easier then to talk to people about it as I find it a bit difficult to communicate with people as well. Especially when it comes to a bad MS day. But I want to help my family and friends understand but can’t do that without sounding like I’m moaning.
How do you guys communicate with people to help them understand?

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peterfrancis
5 months ago

Hi Millahkamz

I understand your frustrations with communicating with those who do not understand the disease. I too have difficulty expressing how I feel although a lot of my symptoms are visible as I shake a lot and have trouble walking properly. But, it is the mental side of MS that I find the most difficult to talk about and explain to people, even thing about it brings on headaches, tremors and frustration which ultimately makes me feel worse.

I communicate simply by saying “Look at me.”


grandma
5 months ago

Hi Millakanzh and welcome. I’m an old codger, 62 yrs old and have had the beast for 24 years (that I know of) still here, still fighting, though it’s bad enough fighting the disease without fighting the government, the NHS, the council et al doesn’t do much for the stress levels which are important in ms, never mind there is light at the end of the tunnelln (but according to Murphy Law it’s the light of an oncoming train) keep smiling😍


nutshell88
5 months ago

I guess most MSers faced this peroblem specialy in family and friends
I doubted myself in the past and still do sometime noe
I sometimd think why everyone’s mentality treatment way of speaking have changed
and i think why would i think that i should communicate with myself faily

i sometimez face difficulties understanding my MS
Im grayeful to god I’ve had this disease for over 10 years got atrophy uncountable lesions
but i get no symptoms at all
maybe once every few years im off all treatments never taken any still my health is super i have a job but i feel indide my heart my illness is not a joke invesible pain in my legs for yrs how would i rxplain my feeelings

i tried in the past but then i prefered gathering what i have left in my health to enjoy as long as im fine rather than adding more stress on my mind

I hope your family understand your shock of having MS
its a matter of time

be safe x


stumbler
5 months ago

@millahkamz , here’s a document that may help:-

https://support.mstrust.org.uk/file/store-pdfs/Explaining-MS-to-others-WEB.pdf

It’s also available to order in hard copy (free of charge) from the MS Trust (www.mstrust.org.uk).


sherryak
5 months ago

@millahkamz, I don’t have issues with getting my family to understand it because my father had it years ago. My biggest challenge with my family is that they don’t want me to go the same route that my father went, so they try to keep me as active as I’ll let them. I occasionally send them articles (that they actually bother to read) to help them understand why I decline doing certain things now. Here’s an example of what I send them: https://multiplesclerosis.net/living-with-ms/movie/ My work family is good with it too. We don’t dwell on it, but I’ll bring up things in front of them so they’re not afraid to offend me with asking something about it. I just treat it like a pair of glasses or a broken ankle – it’s just another thing in my life. They know that I can’t handle the environment being too warm & that I’m not afraid to speak up & let them know that I’m going home if I’m having a bad MS day. It’s just a necessary evil in my life. I look at it like aging. You may not want to get old, but it’s better than the alternative. Same with MS. If I didn’t have MS, then I’d be dead. Having MS is better than it’s alternative. It is what it is.


potter
5 months ago

Your family will never truly understand how you feel. If one of them had cancer would you know how they feel? This is why we are here in the forum, we know what you are going through. You can rave and rant anytime you want and we will understand and just might rave and rant with you. Potter


acacia
5 months ago

Hi @millahkamz,

I’m also quite new to MS and to this site (only joined yesterday), but completely understand what you are saying. I have not (as of yet) had any visible symptoms, though my first lapse (can you call it a relapse if it’s the first one?!?!) had me laid out with terrible pins and needles sensations from the neck down for almost 2 months. My family and friends have been really understanding, but I kinda feel like there may be limits to how much sympathy they have to give me, so find myself avoiding talking about it when I am feeling upset or stressed about the diagnosis (have not had further relapses yet, luckily), as I worry that if I talk about it too much then they may have exhausted their patience with me by the time I relapse and need it most.

That is one of the reasons why I joined this site, is I figured that other MSers would understand more and be able to provide support and guidance that my family and friends would not know how to give (no fault of their own, of course). Hopefully we can all help each other through it as best we can. 🙂


vixen
5 months ago

@acacia, that’s brilliant to call your first episode a lapse, wish I had thought of that! @millahkamz, I guess that even an expert in empathy, such as a counsellor, can still never fully know what it feels like to be one of us lot! There is the physical side, but also the mental and emotional sides too. To be fair, I don’t enough understand myself sometimes! The people on Shift are all unique and indeed, very special people! X


rambles
5 months ago

Hi @millahkamz. The MS Trust and others have publications you can give to friends and family which help them understand some of the basic things common to many pwMS (or you can view a lot of this online of course). https://www.mstrust.org.uk/understanding-ms/living-ms/family-and-relationships
(Sorry if that duplicates some of the info @stumbler directed you to … but I did find it helped and seemed to be useful and appreciated by friends and family.) X


acacia
5 months ago

@vixen, hehe – thanks! Glad you got what I was trying to get at – when I said the same thing to my MS Nurse she just looked a bit confused lol

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