Hi, ive recently started dating someone and they have told me they have M.S, since telling me they have backed away from me, I told him it makes no difference to how I feel about him, could someone please advise me what to do/say?
hi, i think its great you have come here for advice and info.
ms is so different for everyone and no one knows how their ms will affect them.
i was diagnosed last year and its too late for my husband to back out - he married me for better or worse! but i have had times when i think if i was diagnosed before getting married i may have walked away because i dont want someone i love seeing me decline and having to do everything for me.
ms doesnt just effects the person diagnosed with the condition- it affects their nearest and dearest too
Hi hum i wonder if he likes you and doesnt want to get hurt. It could be that he has been before once he told someone. Easier to go arms length for own sanity.
Its easy for you now to say to him it makes no difference to you, but in his mind it will.
MS is made into a huge MonSter of massive proportions. Its like being told you have Leukemia years back before there were advances in curesā¦HIV etc etc. MS seems to slip into this OH MY GOD your doomed category.
OK yes its an ongoing disease but many many thousands with it, go on to lead normal happy lives for years. My sisters mother in law had it 50 years and passed away at 82 with her diabetes.
My husband had COPD which is a life threatening disease and also can be progressive with an END STAGE OF LIFE. It creeps up on you. One minute you are feeling ok, then blam, you get pneumonia from no where and sepsis finishes you off. He had COPD when i first met him. I never even thought of it, i didnt have MS. then the two met together, and he was worse off then I was in the last 10 years for sure. we were together 30 years. I lost him 3years ago suddenly with sepsis due to pneumonia.
what i am saying is many diseases have progression. Why is MS seen as this oh my god dont touch me MonSter. Why are we not entitled to happiness when we are diagnosed with it. All these years since it was discovered the attitude towards it seems to be worsening.
Your new boyfriend is probably one of those who thinks its best not to start then burden someone with his illness later onā¦but life isnt like that.
Life is like a box of chocolatesā¦is true.
we never know what we will get.
so after all that writing lolā¦if it was me, and you like him I would talk to him and just say you would rather have him as a friend in your life, then not have him in your lifeā¦and just take each day as it comes, UNLESS he is just doing this back off because he doesnt want to continue and making you feel bad about it. (I am sorry i do have a cynical streak in me lol.
So well anything worth having is worth fighting for.
Or, heās just not that into you?
Is it possible that heās using MS as a hook to end the relationship? I may be doing him a massive disservice by saying this. But sometimes people get something that changes their world view (like for eg an MS diagnosis) and they just donāt want to end up leaning on you when they ultimately donāt want to be with you long term.
Or maybe that he needs time to pay attention to the new bltch in his life (ie MS) before he can pay attention to you? (By this I really donāt mean to insult or offend you - just a metaphor!)
MS is a devil of a thing to get used to. Thereās a lot of learning, not only about the symptoms and the possible long term effects, but the drug therapies too.
Sometimes people need to get their own heads around it before they can attend to personal relationships.
Try to establish with him whether the door has shut or been left ajar? Or like CC says, does he want friends more than lovers right now?
Be led by him as to your future relationship. But only so far. Donāt forget you deserve someone who loves and trusts you. If this guy isnāt your āforeverā, then remember that and move on.
Sue
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great reply. xxx
MS for whatever reason is the disease with the worse reaction from people. The one where people donāt want to have anything to do with. I canāt think of another disease that is as badly and unfairly reacted to as MS, not even HIV.
You see it in people as I struggle to walk past them, you see it in people when out in the pub, not that I socialise anymore.
I hate this treatment and have been abandoned, ignored and avoided by those I thought were friends, family and strangers.
I do not wish to be in a society that treats me like that. Even my wife is now stepping back.
What is the point.
I am not a nasty man but I would be lying if I said that I do not wish a similar catastrophic event like this on others
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I think some of it is down to ignorance as well and they just dont know what to say. Its hard to see someone you know change over time. I saw it with my husband who had COPD. He was an amazing engineer full of life and inventions, and worked so hard and before i lost him, he would sit i the conservatory just depressed. no amount of support made him feel happy in fact the opposite, it just reminded him how ill he was.
Perhaps your wife was like me with my husband just didnt know how to help or deal with it? I decided communicate was the key and i started to treat him more like i would before he was ill. before he left me he was better actually and even went off on a road trip to look at bungalows for us.
I made him feel like he could do it again.
Sadly MS is so misunderstood. Fear seems to be the driving force of peoples perception of the disease. x
What beautiful words. Your husband was lucky to have you and, as I am sure you will say, you were lucky to have him.
Unfortunately I do not have that closeness with my wife. We live in the same house, that is the sum of it I guess sadly.
I just do not understand what drives this fear of MS. Why the public treat and look at you with what borders disgust. They move away from you. Closer to home extended family retreat. Friends, people you know disappear. It makes me so angry and Iām afraid to say I hope they have some catastrophic life changing event.
Yes that is not nice but I cannot hide what I feel. My whole life has been ruined by this disease, why should they get away with this! The MS Society and other similar organisations, in my opinion, can do a lot more than they have done in raising awareness, understanding of MS and how to treat MSers with compassion and kindness. Medical people should stop this wait and see policy for MS sufferers and for my PPMS, the most overlooked of the MS variants found on the backseat of any research focus.
I am reluctant to leave the confines of my house, to be the token disabled amongst others in a bar or restaurant and being looked at with disgust.
This is not a life to live. There is no joie de vivre left. I have lost me and found misery.
Happiness and joy are now just memories of past years. I feel like a leper probably did back in the day, avoided and isolated, maybe I should be confined to an island.
Sorry for that
xx
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Aw Giova
I completely understand your anger and frustration at MS, the people around you, friends, family, even complete strangers. I even get the āI wish theyād get something horrible and life changing, then theyād get itā. (Truly, there are times when I feel the same!)
You have been very unlucky in a) having MS, and b) having experienced some really crappy responses from those who are supposed to care for you.
You say CC has been lucky to have her dear husband. She was. Very lucky. And yet, so unlucky to lose him at such a young age.
Iām very fortunate in my husband. He takes on board everything that affects me and accepts it as his lot. He even puts up with my occasional bad moods, extreme grumpiness and moaning. (Believe me, in the right state of mind I am a first class whinger.)
I believe that we all have the right to utterly refuse any āacceptanceā of this horrible disease. I donāt accept it. I have had to come to a certain co-existence with MS. But I most certainly donāt have to like it.
However, I donāt think itās terrible healthy to dwell on the *Ā„#ā¬]Ā§^! fury that MS has left you with. Obviously itās your life, only you know your experiences and only you know just how badly youāve been treated. I donāt mean to patronise you by saying āthere, there, donāt be so angry!ā Honestly, thatās not me. I believe only you know whatās right and appropriate for you.
Just keep in your mind that intrinsically, we are on your side. MSers look after MSers.
Sue
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i could just cry with your words @Giova I really could. I said to my friend today i am worried about my dog as she needs the vets, i have to find someone to take her it drives me mad and I said to her I HATE THIS BEEPING DISEASE. I cant do anything without having to plan. I used to be strong and vibrant i worked 60 hours a week full of vigour and excitement of life.
Now i just wait for GOD in my little bungalow with my dog for company. I actually said to a few friends who stopped seeing me when i was diagnosed with PPMS Its not INFECTIOUS you cant catch it off me.
Disablity just sucks. MS sucks. But some how i still find that there is things in life that can make you smile. I hold onto those moments.
try and find your way back to your wife. I so wish i had my lovely hubby still with me even with his faults lol. I miss his greasy hand marks everywhere lol. His mechanical bits tripping me up and most of all his lovely blue eyes and smile.
I so wish I had the same sentiments from others.
Grab them, hold them donāt let go. They have probably only had the opposite so it must be tough for them to be accepted
Thank you Ssssue, it remains though very tough for me. Especially on sunny warm days such as these when others are doing the things I can no longer do
Thank you Crazy Chick. I struggle to read my own post as it a small picture of how I was feeling that day and it makes me sad and tearful. Each day is the same but thank god for people like you. The thought of never ever again being accepted by society again is too much to come to terms with and almost makes me wish that MS was contagious so that I could crawl up on my knees if need be to the now distanced ones, āfriends, familyā, and hug them.
Thatās how I feel sorry but they along with many others have turned me into this.
xxx
morning @Giova you have to break the cycle. Make new friends, i know its difficult with this pandemic i appreciate that but you must have friends that dont make you feel so bad. If you havent then they were never friends in the first place.
I live in sheltered and some of us are disabled and we understand the constraints.
I decided to cut out anyone who didnt take my MS seriously. Oddly enough it took so long to be diagnosed now one believed me. that was even worse.
Then when i got the diagnosis i showed a copy of the letter to my family and suddenly it was all different. I didnt allow them to ignore me and pointed out that they too had their own health issues. it was all the friends i had made at work who just dropped me and some other friends i had known for a few years.
Perhaps i am a little luckier as i come from an italian family and when i lost my mum we got much closer.
dont be sorry how you feel. but put it into perspective. You seem a very caring and kind person and that is all that matters. x
Hi Crazy Chick.
We may have messaged before.
You have brilliantly described how MS is viewed and mirrors my thoughts. The description of ādont touch me MonSterā is excellent