This could come across like I’m being ungrateful, but I’m more frustrated. Over the last year or so I’ve realised who my friends are. Some just haven’t been there when I have needed them. Over the last week I haven’t been feeling too good. In the last 24 hours a couple of so called friends have been in touch asking if I’m ok, yeah which is a nice gesture but where were they when I really needed them. It kinda feels like they are using my ms as something to latch on to. And then some people seem to avoid me coz I have ms. Has anyone else had similar with their friends?
I’ve noticed a similar thing with the people I work with. Most have been brilliant, but the ones who I would consider my friends have been almost ignoring my condition.
I do think a lot of it stems from ignorance about ms, if you ask a room full of people what they think it’s about most will say it’s someone in a wheelchair.
Also I think some people are embarrassed about the changes in me, I was always the one leading the way in activities and pursuing a fairly active lifestyle. (I used to walk 10 miles a day- on a bad day now can barely manage the stairs!)
I’ve often felt like asking people what they think about me having this condition but it might sound like asking for sympathy, so I never do!
yes i have experienced the same but thinking about it, they all have their own lives with their own problems.
did you tell the two who got in touch that you weren’t feeling very well?
you should if they asked but add that you will probably feel better tomorrow.
some people do avoid people with illnesses, i think it’s because they haven’t evolved fully.
i have only kept a small circle of friends who all have very busy lives but we still meet every few weeks.
maybe you could arrange the same.
i have said that busy places make me dizzy and i’d prefer a quiet coffee to a busy bar.
if these friends know how you feel, maybe they’ll fancy a nice coffee and think of you.
don’t write them off yet. give them a chance of understanding the new you.
it’s a frighteningly lonely place this ms.
i’m struggling with it myself right now.
you can do it minnie!
I know what you mean, I’m generally the one that does the organising luckily I still do some (but I’ve been making a couple of mistakes recently) Last year I had a bad spell with a mixture of things so I wasn’t getting in touch with anyone. During this time I realised who my friends were, some made the effort others didn’t. And yes I know what you mean, i struggle to talk about my ms because I don’t want to seem like I’m attention seeking.
Hi Minnie, good advice already. Some people aren’t able to deal with somebody having a chronic illness, be it MS or any other. I think it’s because they don’t understand what we’re going through, especially the bad times & perhaps they’re at a loss to know what to do or say.
Did you tell these friends that you were going through a particularly bad time? If you did & had no support, as a friend would, then you’ll have to decide if you want to keep the friendship going…but if you said nothing about how you’re feeling, they wouldn’t be able to read your mind.
Good friends are worth their weight in gold, they are the friends that still hold you close & support you, whatever happens.
Yeah they knew about the issues I was having. I’m not a great talker, I don’t like going on about my problems. I do believe if someone wants to know about the ins & outs. I also feel it shouldn’t take one person to make the friendship work, I got tired of making all the effort. When I was low, I stopped making the effort, I didn’t have it in me. Some people made more effort with me at this point some made none. That’s why it feels so strange for them to make an effort a year later. It doesn’t help that I’m feeling really crappy at the moment. I was never an ill person before and I feel like I’m taking the mick being off work, think that’s why they have been in touch. There’s been other times when I’ve managed to go to work &,hidden how I was feeling. (Sorry think I’m going off on one now lol)
what exactly is it you want them to do? how do u want to be supported?
we (users of these boards) cant agree on all things so joe public have no chance!
as you have said yourself-you are not a talker and i am guessing your friends dont have crystal balls!
please dont be too hard on them-they wont have a clue how to deal/cope with you because they have no idea what it is like to live with ms. in fact i dont know how u live with ur ms-i only know how i cope with mine. thats the same for every one of us.
so in answer to ur question, no i havent got a similar issue with my friends cos i am openly honest with them which wasnt easy initially but now we are all reaping the benefits.
please dont think i am a smart a***! far from it! but i am fairly disabled now and one thing i have learnt over the years is to be honest, firstly with my self and then those who care about me.
ms is a very lonely isolating illness primarily cos we are all different and we all cope differently. its easy to expect some understanding but in reality how could they possibly understand what u r experiencing?! i wouldnt wish this on my worst enemy but i also accept this is the way my life is and make the most of it. does it really matter who makes the first move? a real friend will be there-accepting you as you are. the rest can bu**er off!
take care of you. ellie
Yeah they did know there was something wrong. And didn’t make the effort, at the time they were my closest friends. I don’t want anything from them now, when I know something is wrong I will at the very least text & say hi. If they wanted to know more they could of asked. Yes I’m not great at showing my feelings but once over they knew straight away & asked me, that stopped a year ago. I was just wondering what other people’s experiences are since dx of ms
“Champane for my real friends – real pain for my sham friends”
Hawkeye Pierce – MASH
My real friends actually forget that I have MS sometimes and don’t make a big fuss about it when I’m having difficulties (yes they offer to help!). Those who I thought were friends have slowly drifted away and I hear nothing from them anymore.
I have had this ‘thing’ since 1978 and I talk about it to anyone who wants to listen. A lot of the time they DO want to find out more and I tell em, so don’t give up.
Thank you I’m ok at talking if I think people want to know & are willing to listen.
Best way to find out who are your true friends, a chronic illness.
I agree, being ill can really sort out the wheat from the chaff when it comes to filtering friends. Most people, at best, prefer to take a step back and you end up feeling that you might as well have leprosy. The only good thing is that the ones that stand by you are the ones worth keeping.
Believe my I know where you are coming from. But this last week I can now count on one hand my true friends, those that are for you through thick and thin. Tell the rest to take a hike and make sure you hang to the true ones, they are worth more than anything, and I am very grateful for those few.
I’ve definitely learnt who my true friends are.
Hello Minnie_Mouse, 'cos I’m lazy and don’t like reading I don’t know if the following guff has been said already.The problem with friends is them not you.Even though our wonderful condition is not fatal in itself some people start having issues with their own mortality.Even the ones who know it’s not fatal worry about how they would cope,and there may be vanity issues with sticks,crutches,scooters,blah blah blah.
Two very good friends of mine are German and I met up with them two weeks ago.They’ve seen me on my power chair before,and when they did for the first time,Jorg said of how I cope,“We wouldn’t expect anything less”…They are true friends and what he said shows how strong their friendship is even though they are back in the Fatherland (his words).They know that I’m still in this knackered painful body,but they don’t care, and remember me when I was in VERY rude health.
I reckon that’s what true friendship is.Distance means nothing and Stef phones occasionally,and we natter as if we saw each other the previous week,even though it will be months.They will never dump me and maybe the way they are is an indication of how friends should act.There are three real friends locally and I’ve been dumped by some who I had misjudged.