Hi all Not dx’d yet. Had second MRI which neuro ordered for ‘confirmation of diagnosis’ and am awaiting results. See neuro on 4th June when I fully expect him to give me a dx. Was talking to my mum the other night. Obviously I am stressed and anxious about upcoming appt. I know I don’t have to explain to people here the interminable torture of being in limbo. My mum told me she is worried for me. Not for what might lie ahead, she said she is worried for me because she thinks once I have a dx I will use MS as an excuse. I’m lazy apparently and she thinks that I won’t live my life because I will be using fatigue or whatever symptom to ‘get out of things’ I don’t want to do. Or can’t be bothered to do. I am so hurt by this. I work full time. I keep a clean house. I see my friends and I see me family often. Yes, I am regularly very tired. But shouldn’t an ms diagnosis explain why that is? Rather than her telling me I’m lazy. I feel like I don’t even have a dx yet, but am already having to defend myself. For things that haven’t even happened. God forbid my fatigue is ever so bad I have to duck out of anything. She’s obviously already decided I will be making it up. I love my mum dearly. But this has really hurt my feelings. Sorry for the essay - I’ve been stewing on it for a couple of days!! PG xx
you should write this down and tell her. Maybe she meant it in a way that was motivational but it is easy to interpret as critism. Tell her you feel hurt and want support not judgement, and give her more info on MS.
Aw, not easy to deal with people like her, especially when you’re stressed. If you live with her, you’re kind of stuck with the attitude, but if you don’t live with her, limit your time around her if she makes you feel like that. You’ve got enough on your plate. Xx
It’s a funny old way of saying, ‘I love you’, but that is probably what it is…
We do not always show our best side when we are worried, and there are few more worried people under the sun than parents who fear that their child (of any age) has a serious health condition. In other words, these are circumstances that are pretty much guaranteed to summon up your mum’s inner plonker in its full glory, if she has the faintest tendency to behave like a bit of a plonker at the best of times, which I suspect she probably does!
Try, try, try to let it be water off a duck’s back. You are right in suspecting that a person with MS has to grow a thick skin. I’m afraid that this applies to nearest and dearest at least as much as it does to strangers. I know it’s hard, but try to recognise that it is her distress talking. Managing other people’s reactions is one of the toughest things to do at a time like this, and I really feel for you. You are absolutely not alone in feeling the way you do.
…and another thing - this strikes me as a classic case of denial: the implications of an MS dx are altogether too much for your mum to handle at the moment, so her mind is taking refuge in the safer waters of worrying about the kind of nonsense she was going on about. It would be good if she was able to give you the support you need, but right now she genuinely is unable to, most likely, which is sad for you both. With luck, that will change, but for now I agree with Beverly - you need to practice self-defence and insulate yourself from her, emotionally at least.
Thank you all so much for your replies. Alison, I hope you’re right in a way as denial would be better than her thinking I am a lazy faker! I will choose to look at it that way and hope that she manages to get out of that mindset soon. I only live 5 doors down, so can’t really avoid her. Nor would I want to really, I love her very much. But saying things like that just doesn’t make me feel any better about the current situation. In future I will try to rise above it and try to keep in mind that she’s only saying these things as a very weird way of showing me she loves me xx
My mother was there for my diagnosis, and while we were getting in the car, she told me that I could put my ME diagnosis (previous dx) out of my head now, and that she was worried because I was spending too much time in bed. The irony is that my Mum also has MS, but doesn’t suffer from overwhelming fatigue.
For people who care about us, it can be very frustrating/worrying to see us unwell, and in their denial, it’s almost as if their saying these (very unhelpful) things makes them so. Realistically, there are certain things that you can only truly understand if you’ve experienced them. I’ve often thought that people have finally ‘got it’, only to be disappointed by an off the cuff remark.
It’s taken some time, but I find these remarks less upsetting than disappointing now, and I’m sure you’ll get there too PG. I don’t know about you, but I can feel guilty all by myself without additional help from others, lol.
Hi I found it hard and still do at times, , as I have only half a dx, to justify my tiredness, lack of being able to go to evening invitations, although the invites have almost stopped coming.
One of my early experiences left me fuming with my hubby. He puts newspaper down at night for our doggy to wee on. He snapped at me,
Why cant you walk over the paper, instead of messing it up? I replied really angrily with frustration,
Ring the MS centre and ask them, because I DONT KNOW!`
I’m glad I’m not the only one, on top of feeling rubbish, I’ve had stupid comments and remarks and it made me feel absolutely useless. I think I need to grow a thicker skin me thinks xx
You have my every sympathy my hubby and I went out for the first time in years with my parents for a buffet meal. I said I could use my badge not much comment made but when we got out the car. My dad then said ‘oh complete the picture’ and laughed I asked him what he meant and he said ‘you are no more disabled than me’. People outside of where we were going to eat heard him. As I tried to get up the few steps he was still laughing pulled on me and we all nearly ended up in the floor. I just turned round the the people looking and said you can’t take him anywhere. I was mortified, my parents never ask me how I am. I wish that we had not gone. Sadly, they have no idea of what I am going through. I think that is why I have turned to this forumbecause I can get the emotional support that my dad clearly can’t give. You take care, we are here to listen Lou x
Unfortunately some people are so wrapped up in themselves( this includes parents) that they can’t or won’t see what a struggle someone else is having. I think that’s an awful thing to say to you, especially coming from your dad. If I had been there, he’d have a mouthful from me. I just can’t be doing with selfish people, end of :s
I’m sorry to hear that someone close to you would say something so insensitive at such a difficult time, I’m quite new to the diagnosis process i wouldn’t be doing it tbh if it wasn’t for the people who helped me here. i find it very hard to talk to my family with my problems because although i don’t know what it is yet the rate of progression is alarming for them and myself, and my mother is wonderful, but my dad is the type of parent who denies anything is wrong and continues to say “i think you’ll find its stress” despite the fact his 23 yr old daughter is clearly very ill, since february, ive lost 3 dress sizes, i have holes in my vision, i barely eat because I’m not hungry and i am in physical agony and yet he still says its stress, even after 4 doctors have said its neurological. my main point in my essay is that families as wonderful as they are sometimes don’t know how to react themselves and say dumb and hurtful things, but sometimes its easier to deny and push away than to accept, I’m sure your mum would be horrified to see that a silly comment had hurt you so much, irrational times you have friends and advice here Char x