rulems 15/01/17
Last reply 1 year ago
Why are people so obtuse?

When I got out of the hospital people tried to be as understanding as possible and I thank them for that. But as time went on a lot of people, some of whom are members of my family, lost their patience with my symptoms and the understanding for the challenge that is my life. In fact, some people started to resent my MS conversations because they were ‘too negative’. I just want to know if others are faced by obtuse people (my favourite one is “How come this person has MS and they’re working and you are not.” Like I have a damn choice.CDC’s ) who are just annoyingly insensitive and slow to understand or is it just my luck???

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stumbler
1 year ago

Hi @rulems and welcome.

There isn’t a great understanding of MS out in the general public. And, it’s an “invisible” illness so no-one can really relate to it.

So, it isn’t just your luck, it’s an international phenomenon.

You’ll quickly learn that the only people who really understand MS are those people with MS. 😉


naomih
1 year ago

My personal favorite it “…but you’re ok!”. Because I usually find it easier to hide and people usually find it easier to forget!! Just stay true to you and always remember that generally as people, we are annoying twats!! Even I sometimes think I’m faking because it does not make sense.


cameron
1 year ago

You’re so right. I was 53 when dxd – already a cynic about many aspects of life! I think I projected my own (pre-MS) prejudices onto how I decided to react to the outside world. I just knew that people would be whispering in corners at work: I was the only female in the management team and had already faced sexism and prejudice from men (and women) who wanted my job. So I decided to keep it under wraps and tell the minimum of people. Fortunately, my employer was excellent and made this possible. On the couple of occasions I did confide in who I thought were trusted colleagues, I was betrayed. Outside work, I found that I lost friends. As you describe, they were sympathetic at first but that wore off. My closest friend, whom I’d known for 30 years, told me I was’obsessing’. That was because I wouldn’t miss my swim in order to go the cinema with him. It’s all fine now, though. I really do have a new life. MS is in its box and my new friends accept me as I am. I don’t have to make excuses or even talk about it. I have created new routines and new pleasures. I live by the principle SEIZE THE DAY’. That helps me get out and do stuff. If things get bad later on, I want lots of good memories. My advice would be: expect the worst of people, cherish the ones who break the mould and live every precious moment.


lucyh
1 year ago

Dear @rulems, firstly, I’m sorry for what you are experiencing…we’re with you on this one… @stumbler, @naomih and @cameron have all replied, looking at this prism from different angles, and I suspect we experience all of these ‘angles’ at one time or another (depressing when they all come on the same day); it really is a case of trying to walk a mile in our shoes and it’s hard to do.

I genuinely think (after some time feeling differently) that people are trying to be positive by saying: but you look great / I can’t see anything wrong with you / but you’re managing / I’ve been feeling awful lately too (the last one is possibly to let you know that they understand where you are coming from…yes!). They are trying to understand why you cannot work and someone else can..they may even think this is a helpful comment to make, as maybe that other person has access to some drug you need to try (!!!).

The hard part is when it is a loved one trying to understand…how can they truly ‘get it’ and, even if they do, they are powerless (my husband finds that the hardest..that he cannot change things). The best thing to do is meet up with others with MS; I’m going to do that really soon and it’s good to be in the company of people who genuinely might know how you feel.

Take good care, best, lucyh xxx


cameron
1 year ago

@lucyh‘s comments brought to mind a point I should have included in my ‘rant’. All the negativity that may be around you, making you feel wretched, can seem far less significant if balanced against one reliably positive voice. We all need someone to help us see the reality of our situation, draw out the positives and give us a blueprint for how to move on. For my money, that person is someone medical: when my consultant tells me ‘You’re in control, what you have to do now is xyz…’ – I believe him and his words become the voice in my head which drowns out negativity. My GP is another such voice. Do you have any such support and if not, is there any way you could access it?


Anonymous
1 year ago

why didn’t I come on here sooner???

so sick of them judging me, sideways glances of he’s faking it, I thought it was just at me

I repeatedly push myself too hard – trynig to prove points I can still do this or that & then MS bites back I’m flattened – which is followed by comment likw “well you were ok the other day?”

so now I’m on here I’m going to soak up all the joy from not being alone & probably annoy people because I live on line & spell really badly 🙂

TTFN


Anonymous
1 year ago

Hi. I was diagnosed in 2001. I told a select few people in my life, including my bosses and a couple of co-workers. At the time of my diagnoses it was obvious that something was up with me, but as time wore on and the symptoms cleared up (the obvious ones), I began to feel as if they though I was a fraud. I even began to convince myself that I didn’t have MS and quit my meds twice.

Over the years I have had some relapses, but nothing as bad as the one that led to the diagnoses. All my symptoms just lurch below the surface. MS is a real mind eff. The older I get all those little things keep building up. I walk slower, I talk slower, my voice cracks, I occasionally can’t find my words, at times I have troubles picking up my feet . I have problems with my vision that can’t be corrected with lenses. All this makes me a bit odd to others, but I press on.

Someday, and that may be soon, it will become apparent that there is something amiss with me. Until then I’ll keep my head down and keep moving forward. I know I’m a little different and it DOES bother me, but so what? Just know that your in good company, we just can’t see each other.


rulems
1 year ago

Thank you all for your replies. I totally understand what everyone is saying. I just say to myself “if I had a close relative/friend with MS would I be the same.” And I think that the answer is hell no. I think that someone else mentioned just how difficult it is when people (some of whom are my closet relatives) think that I am actually faking or over exaggerating my symptoms because I don’t want to work. I understand if a stranger said something like that but I would think that my family would know that I didn’t get my MA degree to avoid work. Like I said, obtuse…


mark_gordon-hill
1 year ago

Hello
I know what you mean I have had friends that say they understand but when it comes to it they know nothing
I have been a target for people to have my benifits stopped and mobility car taken off me because I look OK in public but struggle behind closed doors that makes me a normal person and to people I should not be getting anything

I’m not so lucky to have a family to help me but have an amazing brother that will do anything to help me and stand up for me when people are saying why you parking in that disabled space
I have learned to keep being strong and think to myself if only they know what ms people go through

I think everyone on this site who has ms what ever stage they have are hero’s to me for speaking up and sharing there stories

Good luck all
Mark xx


sandwich
1 year ago

My family have never been supportive. I actually have not talked to my mum since I was diagnosed 4 years ago (we had a big bust up over it). I like to think my family do care just cant articulate it. Either way I no longer involve them or speak to them about MS as I just end up feeling hurt. I’ve become more successful at containing my worries and thoughts internally as time goes on and no longer feel a strong need to reach out to someone. I still find this sad if I’m honest but it is what it is.


cocofloyd1
1 year ago

Hi everyone it’s so strange yet comforting to know that this isn’t just my experience. I too had a big fall out with my mum at time of diagnosis. Also other family members/friends all coming away with things described above. It’s so hurtful when the ones we need the most just aren’t there for us and seems like they’re trying to put you down more. Top 3, someone at metafit has ms and they’re ok, that’s her got her diagnosis now, are you still not well! Thankfully I have a great husband and daughters who know I’m not a hypochondriac! Take care 🙂


Anonymous
1 year ago

The thing I find hardest is that for years I have known that there was something wrong, I have battled with tiredness and weird symptoms and had friends, family and colleagues treat me as if I was just being pathetic. I’ve lost friends over not being able to keep up with them and I’ve fallen out with family because they think I haven’t pulled my weight.

I’ve had years of wondering to myself where everybody else gets their energy to exercise and go out after work, let alone keep the house clean and do hobbies. I’d go home, crash, get up , go to work and so on. Holidays would just be recovering, mostly sleeping. I’ve had years of doctors telling me it was stress, or depression, or just my personality/imagination.

And then the big relapse. And the dx, and then I thought it would be OK, everyone would know I hadn’t been making it up. Doctors would take me seriously, family would apologise for not supporting me, friends would understand that when I said I couldn’t do something, it was true.

But no. Even doctors still don’t take me seriously. Friends and family say, ‘you look well’ and I can see them scrutinising every thing I do to assess whether there is really anything wrong with me. Thinking of getting a TShirt printed with my MRI scan on so that I can point to the lesion. How they can still make me feel like a fraud, I don’t know, but they do. Except. Except that I find it hard to put into words how I am affected, so maybe they don’t get it because I don’t explain it well enough?


janshaw
1 year ago

Ordinary folk, never get what having MS is like and don’t realise that everyone who has it experiences it differently. Don’t worry ignore the comments won your MS and do the best you can is my advice. Seek the support of your local MS Nurse. Best thing since sliced bread!


tracyd
1 year ago

For me the experience has been a little different from the stories above so I’ll share but please bear in mind this is directly related to me and my relationships and doesn’t mean anything personal to those who’ve posted above (cautious that sometimes people have taken my comments to mean they were directed towards them before when I’ve been talking about me)

I’ve found there is a very fine line I guess between delivery and intention when people say ‘but you look so well’. When I’ve been in pain but it’s invisible to others, or so exhausted getting out of bed requires more effort than running a marathon but I do it regardless.
That I’m not sitting in my pyjamas with my hair sticking out in every direction and sleep drool running down my chin …… well yes I ‘look well’ – I guess if they said ‘to be honest Trace you look like shit’ if would certainly not be something I wanted to hear and be and very hurtful.
As much as I’m intollerent of people who stay up too late and have a hangover moaning about their physical state or those who seem to thrive on telling me ‘I’m so sick’ and my life must be permanently awful – it’s difficult sometimes but hey I’m not permanently full of doom and gloom and living vampirically on someone elses misery (I call that my failed ‘fuckwittery filter’)
I’ve tried really hard to not take things to heart when people say what they feel is a positive thing (Damn but you look great despite that shit is better phrasing but that I’m looking great despite MS is something I’m happy to take) when I know that unless you live MS it’s bloody hard to get your head around (it’s bloody hard even when you do live it ….)
On those days when it feels like the truck that ran me over reversed back to make sure I was good a properly busted and someone says ‘but you look so well’ my response tends to be ‘It takes a special kind of tough to smile and look this good AND hide the tyre marks’
I’ve discarded a few people along the way, some that hurt and others that were a weight off my shoulders. I guess having only one member of my family left that I’m close to has meant that family wise it’s not been a huge problem (lack of family availability to put their feet in it because they’ve all passed away now 🙁 ….)
Inside Inside I feel so very jealous of those with family that who ‘can’ be obtuse, I’d give anything for my parents or my brother to be so and just to be able to respond and say ‘I love you but please do fuck off dearest you have no idea’
Sorry … I’m rambling and venting and probably coming across all wrong – I’ll shut up now 🙁
Apologies in advance if I’ve pissed anyone off 🙁 xxxx


Anonymous
1 year ago

I love this thread, so theraputic & comforting to know it’s a global thing not just me & my firends / family

one of my bug bears is them reading articles & saying
“look this woman ate vegatables & cured her MS” or “did yoga” or “this bloke with MS just ran a marathon”
“oooh a new treatment, you should try rebooting your imune system?” yes by having life threatening kimmo which is still not proven – er! not right now thanks,
I try saying MS is still all guess work, every case is the same but very different & the stories you read could just be people in remission or medical hype, I may look ok to you now but this morning took me an hour to get some feeling back in my foot & yesterday after the lovely day day out I was totally bolloxed
(can I say bolloxed? if I can’t I appologise – sorry)

🙂 feel better for doing that

TTFN

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