Last reply 2 years ago
Problem with people

I’m struggling with the opinions of people about my recent diagnosis (family, Friends, Even some professionals) i don’t know if i’m struggling with this on my own and get mad about everything or if they are really not helping. I mean, all the opinions, suggestions and theorys kinda make me angry or sad (i dont tell them thought) And i have to tell them over and over things they don’t know (i know they don’t have to, but a quick Google search won’t hurt) about the diagnosis. But really: It’s always like this at the begining or is just me that i’m sad/mad ? (i’m going back to my psycologyst in a few Days after 3 years šŸ™‚ )

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2 years ago

Hi @curuleanblueee – are you an artist? I love that color. I do watercolor, but have done oil too. I think it’s hard to feel as though those around us don’t take appropriate interest in our lives – no matter what it is. But when we’re having to face a difficult dx – it’s esp hard. Seems like people dx with cancer for instance – automatically get a certain sympathy – and an understanding from others that they’re going through something difficult and traumatic. They will either get better, or die.

But chronic illnesses that people don’t understand – there’s an entirely different response. You won’t get better, and people don’t know what to say, or expect. They end up distancing. It’s hard! I’ve dealt with it for decades, and I can only say – you have to either become accepting of it – or you will always be sad/mad. And that’s not good.

I lost friends due to it. When you never get better – people just don’t know how to treat you. So you basically have to define who you are without them! Be a survivor. Have a positive attitude – and if people fail to be there for you, or fail to be supportive – move on or learn not to expect more. It’s a weird deal. Ever notice that people don’t really treat others in wheelchairs normally? I showed up at a group I belong to – more disabled than previously. I had a head tremor and more trouble walking. The ladies didn’t look straight at me! They suddenly avoided me! Wow! Don’t you want to ask me what happened??

Anyway – it’s not just you! Those you love – be open about it. Tell them what bothers you. It will help both of you. Blessings, Jan

2 years ago

I know what you mean. When I was going through my diagnosis and getting my test results back I kept getting the ‘its not so bad’ and ‘I know someone who has it and they deal with it fine’ I get they’re trying to help but it really didn’t, it just made me angry like it was something so easy to overcome. Recently I’ve been getting mood swings more often and I don’t know how to control them and my friends just tell me to start thinking positive but that’s really hard for me to do when I go through these days and it often doesn’t help. I’ve been diagnosed for about a year and I thought I was handling it well but recently I’ve come to realise I’ve never fully understood what has actually happened and I feel like I need professional help to come to terms with this illness and to fully understand it so I’m gonna start seeing a counsellor soon. I don’t expect my family or friends to understand because until I do, they can’t, but I hope they understand that there are times when I’m not in control with my emotions and I hope they don’t hold it against me if I ever shout at them or if I don’t feel up to doing something or if I just need to be by myself for a bit.

2 years ago

Thanks for anwsering Jan! Im a photographer and i love the color :). The thing is i dont want to snap and hurt them. In the past 4 months i have heard a lot of things like “you should do or stop doing”, even my mom suggested to not do the spinal tap, like if magically the problem will be solved, or friends that said me to not start the treatment until i have a few second opinions (im with one of the best neurologyst in my city and i trust him because he was so carefull about the diagnosis, im ok with second opinions but right now i dont want more tests for few months). They said i should stop doing so many sports, or i should do some healing oriental medicine about my ancestors, or thats all in my head and thats the problem, and so on. I know they love me and their intentions are good, but its really difficult to talk about it if no one is listening. Even my dad got angry at me when i first talked about all the tests i had to do, like really? he was mad at me?! i know that its a weird form of react to bad news and the ones you love, but all this makes me feel like i shouldnt tell them anything else. Is like sometimes i feel guilty about it, like im causing the problem, or i deserved it :/

2 years ago

Its been a year since diagnosis and my mum still says things like: “I met a friend who has a friend who knows someone with MS and they are doing (insert drug/diet/herb/exercise) and they are fine after 20 years”
Thanks mum, that’s really helpful.

2 years ago

@cammo you Made me laught. XD yes. My mom is on denyal though, dad avoids the conversation when he can, my brother is cool and suportive but he is really sad about it. Im ok. Just exhausted and it’s only begining the process of getting the medication and more tests.

2 years ago

MS is invisible to the strangers eye. I honestly dislike the idea of letting people know I have it. MS has been hidden well. people family work never even guessed I have it for 14 years now but maybe if i was getting relapses frequently iā€™d feel the need of some understanding from other people in my life.

Stay strong

2 years ago

Hi @ceruleanblueee,

Having been diagnosed only for a couple of months myself, I am going through the stage of telling people about my MS for the first time. It is a mixed bag of responses; although most have been sympathetic and caring, some others have gone down the path of ‘well my friend with MS is still working’ implying that I could be if I just tried a bit harder! I say congratulations to their friend but my circumstances are my own.

I used to be a self-employed outdoor photographer but I had to give this up due to pain and difficulty sleeping that was sending me in a downwards emotional spiral. When I self-diagnosed nearly a year ago, my partner and close friends did not want to listen to my conclusions. They did not want to go there with me until I had a definite diagnosis and, if you look at it from your family and friends’ point of view, you can see why – no-one wants it to be MS! However, your family needs reminding that it is a long road to an MS diagnosis and neurologists do not generally make mistakes as it is the last thing on a long list of possibilities. When I had the letter than confirmed inflammation was visible in my brain and spine I went round telling friends that MS was the best option considering it could have been ALS. People just don’t know what MS is – one of my friends described it as a terminal disease (it isn’t) and I said ‘so is life!’

People react in the strangest of ways to difficult situations. Anger is a common part of denial – you just want to push the problem away. I speak from personal experience! So perhaps your Dad is just unable to express his fears for you in any other way. If he cannot listen then write it down in a letter. That way he can read it in his own time. Good luck and remember to count to 10 before speaking the next time someone says something stupid to you.

2 years ago

The issue is really that you (i.e. we, all of us) do need to express our feelings around MS, but those around us are usually not the best people to either listen or help. After losing several close friends because of this my way of dealing with it is to fasten on to people who do – usually the MS nurses but also my excellent GP, the physio and the neuro. I ‘save’ questions and worries for them. I have one close friend, who also has MS. We tell each other absolutely everything, down to what the neuro said etc etc. If an MS worry is starting, we talk it to death, with all the ‘it might be’, ‘have you tried’?, ‘what does the GP say?’ and so on. When that’s done (and it’s a reciprocal process), if I have to have a similar conversation with anyone else e.g a family member, it comes out highly edited and usually includes the words ‘I’m fine’. So I suppose I’m a bit of a split personality! If I don’t mention it, people don’t have to respond, and as I don’t care for the responses they do give, avoidance seems the way to go. I answer nosy parkers’ questions with things like ‘I have an issue with my hip’, ‘it’s complicated’, ‘I’m afraid it’s a long term thing’. That usually shuts them up. xxx

2 years ago


When you’re diagnosed there is no set recipe for what you ‘should’ do or ‘what will happen next’

It’s a matter of muddling your way through with as much information as you can get your hands on.

There are simply no rules which say you must stop or reduce exercise or change a single thing about how you live your life ….

This is NOT end of days, it’s NOT the beginning of the end and it’s NOT the end of life as you know it

If anyone who makes you feel that way quite frankly should be told in a nice but very firm manner that if they can’t keep their negativity to themselves then they’re going to become a VERY small part of your world if they remain in it at all.

There are things that need to be done as part of diagnosis, tests which need to be performed in order for you to make a decision about how you tackle this going forwards and to do that you need all the necessary information and that requires tests and yes it’s a faff, but it needs to be done.

in regard to how MS can progress, there are DMT (disease modifying treatments) which can pretty much halt MS and others which will slow MS. There are decision points that are YOURS alone to make in regard to how you want to manage YOUR relationship with YOUR MS. (because no matter how well intentioned others are – it’s you who has to live in your body which essentially is betraying you. How you live in it is YOUR choice.

There are many options ….
– hit hard and fast with a big DMT
– begin with a more holistic approach diet / wellbeing see how it goes
– wait and see how it goes make a decision later

If you need someone to talk to, you have a friend request, I’m happy to share contact details xx

2 years ago

Well @ceruleanblueee it can be a Paynes Grey at times can’t it.
It seams for us reading all the comments & previous posts, there is no right or wrong way for us Msers.
I visit my Mum & Sister 4 months ago, a year ago, other times….I could walk better then, They both expected you to carry on as before……my way round it, was to say’s, sorry can’t do, this or that’…..want to, but can’t, so as disappointing as it is for you & them, its just fact…..My sis is an ex nurse, but MS is so far away from what she once did, she has only sympathy & gets upset when I say ‘ No, sorry can’t do it, would like to, but sorry can’t’…..its an odd one for all concerned, but as some of the guys above say…..Its a PAIN, but ultimately you are the one who has to decide for YOU…..I talk a good line in B*locks’ So for a more rounded comment see above…lol……Red

2 years ago

My mother in-law drives me crazy telling me she has friends that had MS for 30 years and never had any problems with it. These are people she isn’t around hardly at all and she probably talked to them on the telephone. They probably told her they were fine, it use to irritate me when people said they would pray for me. My two aunts who had MS were extremely religious, my grandfather was a minister and one of the aunts was married to a minister. The rest of the family died from ALS. People must me praying that you don’t suffer too much it sure didn’t cure any of my other relatives. Potter

2 years ago

@potter i like the fact that they waste time praying and cant open google for once so they can stop asking you stupid questions. But anyway, i dont want to hurt them so i dont say anything at all

2 years ago

@tracyd thank you so much for your words šŸ™‚ i Will try to speak to them and make them realize what i need right now. šŸ™‚ Thank you again

2 years ago

@sylvanna something like that happened to me. It started on 2014 and everybody told me i was overreading my body signs and that was all in my head. Frankly i know my body very Well, but anyway i tried to change my life habits just in case it was only a warning. Anyway this year wasnt that lucky. I really understand what you had gone threw, first thing i asked my neuro was to ruled out ALS , and i was kind of happy when he did. Everything is so bittersweet in this thing. Thank you for answering šŸ™‚

2 years ago

I know you say you don’t want to snap and hurt them, but they are hurting you. Speak up for yourself… how they react will tell you loads. Of course this is coming from somebody who bottles things up & shoves them down deep and then explodes sometimes but you know…. do as I say, not as I do, right? šŸ™‚ It’s good for your soul, I think, to express how you’re feeling to loved ones, even if it’s hard. I’ve had to do it myself a couple of times and it sucks but has made a lot of difference and was totally worth it.

By the way when I tell my neuro about some weird symptom and say “it’s all in my head” he laughs and says “well, actually, it really IS all in your head, that’s where most of your lesions are.” Neuro humor??

– Michelle

2 years ago

At least we can take comfort knowing we all go through something similar! Systemic Sclerosis was my worst issue for years – and it didn’t have remissions! So my MS was hidden amongst my other problems. My lungs, GI tract and joints were all going to pot, and I was in the hospital at least 3x a year (where I got the ms dx). So people have been confused about WHAT the heck was wrong with me!

When I showed up with worsening mobility issues – some didn’t know I had MS! Others didn’t know I had the other stuff, lol. MS is a better known illness – who’s heard of Systemic Sclerosis? So when my sister (a real charmer, lol – NOT) would tell me “well a LOT of people with MS work Jan!!!! A girl at work is in a wheelchair and the company does lots to help her be able to work! I’d say, yes, but that’s not why I can’t – it’s blah blah blah. Then it was “well, you focus too much on your illnesses – I get sick all the time…it doesn’t stop me from going to work!” (Mind you, her alcoholism has gotten her fired from multiple jobs).

I can feel my anger and frustration rising! It’s really hard to live your life NOT talking about your problems, when people need some explanation for certain things. People in my church stopped letting me teach years ago, fearing I’d be absent too much! What??? I was absent less than those who traveled etc. It’s just impossible for people to understand what others go through. A LOT of people struggle with invisible challenges that make life difficult. I’m sure I fail to understand them too – but it doesn’t mean that I always accept this lack of understanding from others, lol. It’s down right aggravating at times!

Last night I was screaming and crying – did all day actually (not pretty, and partly due to my extreme irritability that creeps up on me!) Yet the day before I was talking about how I’d love to go on a cruise with a friend (she asked if I would go with her as a thank you for my design help). Oh – how wonderful that would be! Yes, let’s plan it! Then as I couldn’t bear to step on my feet, and my body was so full of this restless limb feeling and other odd things – I could die!!!! – couldn’t sleep to save my life – I thought, how could I travel with – be in the same cabin with – anyone, lol! She’s a close friend, yet I don’t tell her all the things I go through – because I want her to stay my friend! Oye!

Let’s face it! People don’t want to hear our troubles past a few initial instances. And when they never go away, like with MS – forget about it! We’re all able to sympathize with others for periods of time – but those who always have troubles, get tiring to be around. And when we don’t understand – we tend to either act like we do (giving advice that is not founded on good information), or act like the other person is febil and unwell in every aspect of their lives (maybe even mentally!) I feel as though I am good at listening and wanting to know what others are going through – but I’m sure I fail to see the instances when I don’t.

I tried dating a while back, when MS was little more than fatigue and foot drop – aside from relapses. It was other diseases that were much more challenging. But noone has heard of them, so I would just mention MS. As soon as I did – they were gone! One guy though, just kept asking me for more information. I tried telling him it was too variable to know how it would ultimately effect me, but he kept asking. I thought the same as @ceruleanblueee – Google it already!!! He wasn’t very understanding at all! Very frustrating. I quit trying to date – which makes me sad. I’d love to be in a relationship – I think, lol.

Blessings to us all – I just keep trying to empathize with those who aren’t good at understanding me!! We all have shortcomings! I can just see the ones other people have better than my own! šŸ¤” (I’ll admit, however, that those who offer unsolicited advice about a disease they don’t know anything about – might receive a bit less understanding from me, lol!)

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