Last reply 2 weeks ago
I need some positive thoughts

Since my diagnosis I’ve been really positive, apart from the odd wobble here and there.

Over this weekend, having told my friend who I haven’t seen for over a year, and me talking among other friends who have known since my diagnosis, I’ve had the following comments:-

“We’ll all chip in for a wheelchair!” – that was a serious comment…

“Will your work care for you later down the line?”

“I have a tingly hand, I’m worried I have it – maybe I caught it off you?” …the last part was meant to be in jest…

Now I feel my positivity is being battered down. I know some people don’t know the ins and outs of MS and some comments I try to laugh off but had these in such a short space on time, I am needing a positivity boost 🙁

I think my friend’s instant shock when I told her also made me feel a bit pants. I suppose I shrug it off and say it’s no big deal. Maybe I shouldn’t? Maybe I need to realise it is??

Sorry, bit of a crap post. I can’t even put into words what I’m feeling right now. I just want to say to people I’m not a victim and I am okay.

Should I have a talking to myself and be more a realist??

This makes no sense, just had to write it down.

Xx

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marajade
3 weeks ago

I think it’s always going to be hard for people to understand. Being positive yourself is really what will keep you going. I have adopted the “all I can do is laugh or make others laugh” attitude. This is what I’ve recently said to a friend who constantly asks if I’m better.

“ NO. It won’t get better like the flu. Multiple sclorosis has been a real bitch this last year…1. Many facets of my brain function have run away (no worries, because I can’t remember that most of the time anyway) 2. Partial feeling in my left arm has run away (again, no worries. I eat tacos with my right hand anyway). 3. My toned abs have run away (serious problem. If my abs are spotted, please tell them to knock their shit off and get their asses home right away to help look for the others!) Running away is never the answer”

I feel like they see me as less of a victim if we can laugh. It’s not always easy, but it helps


rea
3 weeks ago

Hello lightning87,
Don’t change your attitude, it will help you keep everything in perspective and get on with your life. When I told my best friend she was devastated & couldn’t believe how calm & positive I was. Eight years later and we are completely on the same page; it’s just something I have and I have to deal with, it’s not who I am. Yes it has changed some things that I do/ don’t do , but we still talk about all the usual stuff- kids/ husbands/ work etc. And of course if the MS is being a bitch she’s there for me.
It will take a while for your friends to get their heads around it , but when they realise that you’re the same person with the same interests ( or you might have some new ones) then things will hopefully settle down. You are not a victim, this is not who you are it’s just what you have. xx


vixen
3 weeks ago

Hello @lightning87 and @marajade. I haven’t really told that many people really, as I’ve found that in my circle of friends,when I have said something, that person has kind of gone to ground a bit as I think they don’t really know what to say. My policy with people who know is this: ask me how I am as you would any other friend; if I’m not doing so good I’ll tell you. If not, it’s conversation as normal. I’m still the same person and still like to gossip about the same things.

The thing with MS, is that the physical effects are one thing. Our thoughts, feelings and emotions are quite another and it’s those things I find need the most work. However, I’m getting there, and am so relieved there are things like Shift, and people like you guys who understand EVERYTHING x


buford
3 weeks ago

I just have to say something about this.What your friends said about the wheelchair was so insensitive. They should have known better. Also catching the MS, that’s just plain out rude. Friends are there for support and to lift you up and if they are doing the opposite then I would rethink who I let into my circle. 🧡


ew5514
3 weeks ago

Hello lovely! When were you diagnosed? I was diagnosed in April and I am going through a very similar experience at the moment!! I am super positive most of the time, but like you, when I have been telling people and they react shocked and say how awful it is and how sorry they are, it freaks me out and makes me think, is it really that bad? I’ve had 4 relapses in less than a year and most recently a very nasty water infection! It’s been the last few days that I’ve been thinking how rubbish ms actually is and how much more there is to the condition than meets the eye!

But you’re obviously a very positive person, as am I, but it’s okay to feel rubbish sometimes! It could be worse, there is always someone in a worse position than yourself which I always think to try and give myself some perspective but equally there is also people who are perfectly healthy with no issues! And so we’re allowed to feel a bit pants sometimes, cause we’ve been diagnosed with a chronic life long illness! I wish you all the best! Xxx


mamawals
3 weeks ago

I say shrug it off. A lot of times people just don’t know what to say when they get big news. Give them some time, carry on as usual, and see how it goes. Once everyone adjusts to the news hopefully it will be easier for everyone. To be honest I’ve only told three people out of fear of how people will react so I admire you for having the guts to say something.


mlgilber1
3 weeks ago

After my diagnosis most of my friends just stopped talking to me altogether. I don’t know what exactly it was about me having ms that scared them off, but at least I know the few I have left are my true friends that actually visited me in the hospital. I’m sorry though, I know the comments are frustrating. I always hated the “I feel so sorry for you…”. I know a lot of people like to wait awhile before telling people, but I like to get it over with and then they can decide if they still want to be in my life. Hopefully they become more understanding!


californiadreamin
3 weeks ago

@lightning87 In our family we are pretty open about our situation. While not always the case sometimes when people hear the news, they dont know how to process it and just say something. Chipping in for a wheelchair may just be the only thing the person could think of as a way to help. On our end, we try to explain the disease what it is and how things have changed, at the very least maybe it will help them with the next person they come across. We have found most people actually want to know genuinely whats going on, maybe lead with more information to guide the conversation if you decide to share it in the future. My wife may say something like she has MS but she is taking medication for it. Usually people ask if that is a cure or not etc and the conversation leads to a deeper discussion.


lightning87
3 weeks ago

See the comments came from people who I am close with. I genuinely think my friend saying about chipping in for a wheelchair was her way of thinking she was helping as suggested. I know she means well but it’s frustrating that people have you ‘written out’ when no one knows the path ahead.

I try to think of it in the way that no one knows what is around the corner, even if they have a full bill of health today. I suppose it’s just the stigma of MS and people automatically thinking it’s a death sentence.

I don’t want pity or people to feel sorry for me. I make my own jokes to make me or the situation better. It seems okay when I make the jokes as then I’m in control but when others perhaps tag on to the humour, that’s when it’s difficult.

Obviously MS is a complex disease and I didn’t know anything about it until I googled a vibrating spine and automatically panicked thinking I had it. But then now I know more, I am not so scared.

Mind you, I’ve been up since 3am not able to sleep as had a vision of the white spots on my brain and can’t shake it.

I was diagnosed 3 months ago so still recently diagnosed. I suppose we will get times when we feel down about life even if we are really positive.

Thank you all for your replies, I am so glad there is somewhere where we can talk and others know what it feels like. It can feel a very lonely disease at times.

Xx


rolly
3 weeks ago

@lightning87
i wish i had all the answers for you. after 20+ years with ms one might think i do. but it’s a constant learning curve!
in the early days, when i told friends of colleagues about my ms, the standard reaction i was getting from most of them was the awkward silence or the ‘oh, i’m so sorry for you’ spiel. in a way i wished they could have reacted differently, giving me opportunity to explain further, instead of people swiftly changing the subject after the silence and ignoring me altogether. so while to you, some of your friends’ reactions may seem insensitive, to me it would have made a refreshing change from the standard reactions i was getting.
but i think i do understand how you feel. if you have been diagnosed so recently, it’s only natural that your emotions are all over the place, and you don’t know what to make of it all, and whether to brush it all off, or be worried about your future. it’s not easy. and being surrounded by folks who don’t know anything about the disease, responding with undesired or insensitive comments, does not make it any easier.
try to educate them as best as you can. you may lose some of your old friends in the process. i’m just being frank here. but those who will remain your friends will be your true friends, who will understand over time. it’s a learning curve not only for us, but for everyone around us as well.
all the best!


rivka
3 weeks ago

I was diagnosed 3 years ago but only recently starting sharing the diagnosis, in part because I use a cane now. The looks of pity mixed with horror are painful to absorb. I feel your shock and disappointment that our close friends can’t do better, but I guess that’s the reality. I am trying to absorb a way to keep my positivity while being realistic and somehow still feel my friends are there for me though they don’t really get it all. We just all need to chat here and learn from each other how to surf this.


lightning87
3 weeks ago

@rolly that is so true, I feel people perhaps hear the diagnosis but don’t hear what you have to say after about the diagnosis. So I was trying to explain I might have a relapse then go into remission but I don’t think people take that on board. They get hung up on the ‘MS’ part and not what it actually means. I was niave in that I didn’t know there were different types of MS, there were DMDs available and what symptoms you could get etc before I was diagnosed so I suppose it’s unfair to expect others to know really. I think it has really put me off telling people, before I was always of the opinion that why should I keep it a secret, it is nothing to be ashamed of but now I realise it isn’t quite so straightforward and if you tell people, you have to expect different reactions. I have had amazing support off friends and colleagues but suppose it’s just the odd reaction and comment I am getting hung up on.

@rivka this is what I hate, is the pity. But I suppose if we broke a leg say, we’d get pity so suppose we can’t not expect pity after sharing our diagnosis. It is great we have this place to chat and for others to share their experiences and how they handle things.


cameron
3 weeks ago

The reason I’ve always been secretive about the MS is because I projected how I would have reacted myself if someone had told me. In my (pre-diagnosis) life, I would immediately have metaphorically stamped MS on that person’s forehead. Pathetic, but true. I therefore think – rightly or wrongly – that everyone I tell will react in that way, so it’s easier to say nothing. Navigating what to say to one’s associates and friends is a minefield. I guess you’ll be like me – get some disclosures right. others turn out to be a big mistake. It’s become a whole lot easier since I retired and replaced the many workplace colleagues with friends, many of them not knowing me pre-dx. I think the discomfiture goes hand in hand with one’s own fear of the future. As time goes on and you get to grips with the symptoms, your confidence grows and it becomes less important what other people are thinking. In any case, you (= we) haven’t got room in our lives to take on board other people’s prejudices: we have our life to lead and that’s enough to be getting on with! xx


lightning87
3 weeks ago

@marajade I had to laugh at eating tacos with your right hand anyway haha thanks, that one I will definitely use!!


rivka
3 weeks ago

Interesting analogy with the broken leg, @lightning87. If you’ll be back on the soccer field in no time, it’s a look of compassion and empathy that you’re missing the rest of the season. If you’ll never never walk again, let alone play a sport, it’s a look of horror, pity, and the subtle “glad it’s not me” look.
Having said all that, mostly people mean well and care and just don’t know what to say. My invisible shirt reads “I want your admiration not your pity”


bonang1975
3 weeks ago

I know it can be hard I’ve heard all the comments you can imagine in the end you just learn to ignore it and people can think and say whatever they like. They have no idea of the challenges we face everyday stay strong👍. Ant


stumbler
3 weeks ago

Unfortunately, Multiple Sclerosis is still regarded as a taboo subject, that should never be discussed. In that respect it’s very much like death – it’s going to happen to all of us, but we are loathe to discuss it.

And, we don’t like an embarrassing silence either, so we say something, anything, whether it’s appropriate or not!

Isn’t it fun being human?


lightning87
3 weeks ago

@cameron just noticed your comment, this is so true. I think in future I will be more selective of whom I disclose to. At least until I am comfortable with my diagnosis and any comments that may come my way. Everyone seems to have an opinion don’t they?

MS does seem like such a taboo subject @stumbler, I don’t know why but it is. I suppose some people just don’t know what to say so, like you say, say anything at all. Or perhaps don’t hide their emotitions as well.

Onwards and upwards I suppose, I feel a bit better for letting it out here. Sometimes I don’t want to overload my family with everything as feel they probably have their own worries about the condition too!


chezy17
3 weeks ago

I’m lucky in respects that I have a great support system in friends and family. Sure we joke that about pimping up my wheelchair if it did come to that, I’m talking Bluetooth, speakers, alloy wheels…everything lol! They treat me no different, if anything they tell me to slow down 😂😂😂.
Sometimes people don’t know how to act or what to say but I think it helps that I’m positive about it all. Sure I’ve had the I’m so sorry line, but it’s usually from someone who is genuinely pessimistic! It also showed me exactly who is real in my life, my ex unfortunately wasn’t, jumped ship so to speak half way through my diagnosis and said it was for other reasons but you live and learn right!
If anything my MS diagnosis has shown me exactly how strong I am, I want to show my kids that you don’t give up, you keep fighting the fight! I’ve achieved more in the last 2 years than I have done in a while.
If people disappear or stop calling, remember that it’s their problem and you’re better off without them in your life, who wants the negativity anyways!

Stay positive chick, keep smiling and just take every day as it comes and if all else fails pour yaself a glass of 🍷! 😊


isaacson72
3 weeks ago

It’s interesting…. I’ve found that most of my closest friends don’t ask me about it at all anymore. I think this might be because when I got my diagnosis almost 3 years ago (have had it for I think 20 years but only had the one episode all those years ago so it wasn’t caught), I brushed it away. I told my family and close friends, but said basically “I’m fine, don’t worry about it.” Then when they would ask me in the months afterwards how I was, I would say the same — “I’m fine, don’t worry, how are things with you?” Then I got really good with deflection to the point nobody ever asks me about it anymore. I got tired of hearing “oh I’ve been tired too, I know how you feel” and “I forget stuff too, it’s just part of getting older.” We’re in our early 40s. Not the age you forget entire conversations that happened 15 minutes previously.

My husband keeps a quiet eye on me, but we have an agreement if something happens that is alarming, I tell him. Otherwise he doesn’t get to constantly ask how I am because it got annoying. 🙂 We laugh about stuff, I think that’s key, so I think you’re on the right path! It’s your MS, your business, you get to share it (or not) as you wish, and handle it the way you wish. With humor or not, it’s all up to you.


gijs
3 weeks ago

@lightning87

You know? it depends on the age when you were diagnosed.

When I had my first “attack”, I told my friends I was investigated for MS. I’ve heard the same comments (I was 28-ish)

Now, being in my 40ties, when I’m diagnosed, these conversations tend to be a little bit different.

Can I suggest some Netflix and a little bit of whiskey/wine/beer, pondering for a couple of days and than accepting that you had to grow up a little bit faster than your friends and moving on? (with your train of thoughts, that is, not abandoning your friends, I’m sure they are sweet).

Cheers! (or, you know, whatever you English people say)


chezy17
3 weeks ago

Gotta love Netflix and beer 😊


beefree
3 weeks ago

Hi @lightnight87 I am completely on your page!

My best friend went through a difficult personal experience recently. We were catching up and she commented that she was knew she was lucky really, that there were worse things she could be dealing with. She was being supportive and meant well, but the pity was tangible and I felt depressed after speaking to her.

A couple of days later my dad emailed to say that he was worried that helping him upstairs with a box (my parents are moving and were dropping off some of my old things) had been too much for me. They were with me for the two days after when there were no effects. He meant well, but I felt boxed by the unnecessary concern.

How others see us has a huge impact on how we see ourselves, although it shouldn’t.

I console myself that existence is our perception of what is experienced and the value we attach to it, and therefore really I’m in control of what matters and what doesn’t. I’m also conscious that caring too much and too deeply is probably part of what’s got me here. That said, it’s only human to want to be accepted and to want good social status.

A colleague recently revealed that she has MS as part of a diversity blog series. I’ve known her for 10 years and had no idea. In that time she has worked in four different countries and climbed a few ranks. She’s still capable, still achieving and a huge inspiration.

When I feel really down, I find myself drawn to researching all the interesting MS research that is happening. And watching the MS reporters interviews with MS experts. This usually calms me and restores some hope.


dmargarita
3 weeks ago

@lightning87
I will try my best to express my self since english is not my first lenguage, but in some ways i can relate to the topic and the way you are feelling.

I think people, even if they are nice people, cant understand what its happening to you and dont know how to react.
I was diagnossed 5 year ago when i was 25 (not that young) and i only told a couple of friends. They were very confused, but most of theme where very supportive. But I still felt like they where looking at me in a diferent way and it kind of made me feel different and with limitations that i actually didnt have. So I stoped listening and focuesd all my strenght and all my energy into myself, and despite the fact that it gets hard sometimes, i have done so manyyy amazing things in the last 5 years, that now i dont care as much what other people say or how they look at me when i have to tell or they find out about my MS. I think that maybe you need to give others some time to learn about MS, and i think maybe you need to take some time just to adjust and to figure out how to handle everything in they way that makes you feel most confartable about it.


scarletclarke
3 weeks ago

Bit late to the boat but I completely agree that peoples reactions have affected my mood. When I received my results I was with my boyfriend and mother, and we were all very positive and even had the consultant laughing and joking with us about how I can now get a blue badge and finally park at the front in shopping centres. A couple of people have the expected reaction of “oh shit” and they think I’ll be in a wheelchair before I’m 25, but I try my best to laugh it off.
My ms nurse described it in a really nice way for me;
“Think of it like diabetes. You will always have it, and it will never go away, but take your medications, look after yourself and you will be absolutely fine.”


chezy17
3 weeks ago

What you can get a blue badge 🙀! 😂


seanachai
2 weeks ago

hi @lightning87

wow, some amazing comments; but honestly I think people know about MS what they heard through the grapevine, which is always the bad end of the spectrum… its a mindset thing, they want to be helpful, feel they need to blurt out some shite…. and so it goes…. its the same for lots of disease, illness…. cancer is an awkward one…. I like lots I on here I am sure didn’t know WTF to say when faced with a loved one with cancer…. when I was told by my brother he would die in 12 months, it was hard…. people put MS in that sort of bracket…. rightly, wrongly….

The thing I personally dislike, is that the onus is on the MS individual to explain to those who no little…. its not the end of the world… it sort of looks like your desperate and trying to convince yourself…

I think as some people have stated, you will find your true friends…. but don’t run from others who genuinely mean well…. its hard to tell but give your friends the best chance…

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