Hi guys. So I don't actually have ms myself, my partner of 9 years was diagnosed almost 3 years ago.
I just wanted some information /help as he won't seek for it himself I'm afraid. 😞 I'm a member of my own groups on heath unlocked and suggested to my other half it may be useful for him to talk to some of you lovely people to better understand what he's going through. He took me up on this and started chatting to some guy on here and found it very helpful sharing stories etc.
Now unfortunately he has lost all interest, he won't even talk to me and his attitude sadly has taken a turn for the worst, putting me in the firing line and it's just so much strain on an already failing relationship - I just don't know how to help him anymore. 🐦
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bandicoot1987
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Hi I think it's good that you are making the effort of reaching out for help for him and you. I was diagnosed with MS in 2004 and I say a year and half ago I found this site. At first I to was Leary in doing this but after awhile the people on this page helped me find answers to questionse about different medicine and it made it easy just to listen what was going on with others in the same boat.
But I do have to say I would talk to your partner about this site but I wouldn't keep on telling him this disease is a hard one to swallow know one other than the people who have it and are living with someone who has it under stands it. Slow and steady.
Don't give up!! Patients and caregivers are both put through hell. Usually at different times. Please recognize that this is VERY common. We all need a small break at times so we can be our best. My wonderful therapist said take at least 15 minutes per day and do something that brings a smile to you and is relaxing. I starTed this 2 weeks ago and it works! We need to take care of ourselves, whether an MS patient or a caregiver. God bless aLl of us that are batlength this super mister ions illness
A lot of us that have it from what I gather struggle with depression. I can at least speak for myself when I say that as a 31yo man, fighting depression, anger and an "off" state of mind, that not being able to provide adds a new dimension to the diagnosis! Some are more equipped to handle this, although evey case is different. I'm not in any position to give life advice, only the possibility of understanding. Pain makes you do and say things that go against your grain. I tried this site on a whim that I could possibly learn something coming from an reclusive antisocial background and could hide behind a screen! I dont have all the answers but have noticed the trend! My doc would like me to go see a psychologist, but the prospect of talking to a stranger who wont understand, scares the shit out of me! There's a stigma the surrounds being a man and having emotion. I'm not accepting anyones circumstances without knowledge of their situation. The change has to come from oneself before an outward change can be observed. This might not always be the easiest thing to accept but without understanding, the situation will not change. If one harps at the fact that ones pain is. Theirs alone then understanding is impossible. I can say for me that every day is a struggle to find a happy median! I know it sounds cliche but any relationship takes work, so maybe counseling maybe needed, or come to a forum and vent, and ask questions. I've tried a different tactic. I want my wife to read into this site a little more and see the differences and similarities that exist in others so you can better understand "MS" I hope this can at least point you in a direction.
That's really helpful thank you. Although he has tried talking to someone at therapy sessions, he had been diagnosed with depression 2 years ago and now won't even continue taking medication for that even though he admits himself it was helping his mood.
It's like he's just given up, I can't talk to anyone about it as he doesn't want anyone to know he has ms so everything were going through has to be kept a secret.
I can't imagine the feeling of having that diagnosis clouding over you all the time it must be awful. I know everyone has there own backgrounds - I don't want mine to sound worse than anyone else's but I'm also battling with nervous anxiety myself. My dad suffers with heart problems and a million other things including being a former cancer patient, my mum doesn't keep the best of health and has had numerous ops this past year and I've been trying to help my partner the past 3 years of suffering depression and ms, who has just decided to give up on everything and shut down. I think I'm quite an understanding person but there is only so much I can handle.
This is why I'm on here, to get some inspiration and help because I might not have an auto immune disease but I too feel like my whole world has turned upside down. 😢
You've taken care his affliction more serious than 3/4 of these cracker jack PHD DOCS IVE MET. My primary care doc introduced himslef by stating he knows nothing about MS. Very reassuring huh!!!
Sounds like he's going through some severe depression and a lot of denial. He wants to give up and it sounds like you're the only one not letting him. I have minor physical symptoms, some severe cognitive ones, and a great deal of depression that goes back many years before MS. Like Fattius I too am scared shitless about therapy. That also goes back many years. Recently I ended up in the Psych Ward and actually found that I could tell complete strangers everything. I'm 57 years old so everything is a lot. I actually found some relief by spilling my guts. I have a wonderful husband and none of this was new to him, but there was something cathartic about telling these strangers. Maybe if you could get him to talk to someone he would feel better and get back on his meds. I'm not sure if keeping his MS a secret is good either. I know most people don't understand it. I'm not worried about that, it's something we all face. But it's part of his denial, he needs to learn to accept it. None of this is easy, I think the depression right now is the most serious issue.
I agree, and I've tried explaining this too him but he gets such a bad attitude towards me for trying to talk to him.
He doesn't really listen or pay attention, he forgets almost everything I say within minutes bless him, I know it's not his fault but it's so difficult to deal with everyday. I'm also trying to run my own business and Ive my own quite bad health issues to sort out too on top of trying to stay strong for him.
Keeping it a secret for 3 years has been so hard, even our best friends don't know!! That's also difficult because his speech isn't as clear as it used to be and so people must just think he's been drinking - he's changed drastically and no one can be explained to why! I'm constantly making up excuses for him as he can't think on his feet and wants no one knowing. I don't know what to do anymore xx
Your exactly right, depression is real and from a happy perch all you see is light but thats not the case for someone who "SUFFERS" through depression! It's always bad for the ones who are in poximity often but that not going to change the fact your situation is dire! Suicide is on the rise and health care plays a big hand in this. Not every story stays dark but doing nothing is the same as murder. Figuratively speaking. Its hard when your own shit to deal with but to leave everyone alone gets us in the situation we are in now!
Welcome, bandicoot1987, I'm sorry to hear you guys are struggling, it seems to be par for the course! Is it possible that your Pastor or counselling might help set things right for you?
I can't speak for everyone and I would never do that but if you read some of the comments were all wanting the same thing just someone to listen to us, and throw out a comment that helps us to understand what is going on with this Monster of a disease. I don't know about you I have these days I don't know what is up or down. I think today is that day for me. Because if I've read what I have written to day you would probably say what is with this woman. Don't worry about I am here writing this and I am
Your partner sounds like Me. A lot of where I used to exist
Unfortunately, for Myself at least, it's going to take time. Sort of a similar model to the stages of grief.
Realize that what he is experiencing isn't just medical symptoms or difficulties. It's a whole new existence he is trying to figure out. A death of who he "was" to who he now has to be - and any piece of who he is or identifies as is in jeopardy.
There's a tragic sense of personal loss with every little piece of ourselves that's ripped out of our hands to be seemingly lost forever
Sometimes that inner struggle manifests with and outward expression of anger, feelings of shame, depression, etc sorry to say.
If the situation is putting strain on your relationship, perhaps some words of insight that it took Me YEARS to discover may help. Perhaps it could create a dialogue between you.
I used to often tell My wife, "You don't understand what it's like". And I lived inside My own secret pity party that allowed that view to take strong root.
One day I realized the error in My ways:
She doesn't understand what it's like to have MS.
And I don't understand what it's like to have a spouse with MS.
I told her immediately and that day was a turning point for us.
He has also said this to me, when he has his nice days. They very seldom exist anymore.
I know he gets angry with himself over things, sadly he gets very confused with simple things lately, he doesn't understand much like he used too. He won't even talk to his nurse about this! Is this confused head/loss of common knowledge even a symptom so to speak? He knows he struggles but instead of talking about it, he gets angry and blocks it out. How can I help? I'm limited to be fair, he needs to help himself too right? 🌼
Mental cloudiness is certainly something many of us experience at one point or another.
And he's fully aware of it an can feel it. He knows how his mind should function and you can literally feel it not working at it should. It's quite frustrating.
Cognitive changes / struggles are one of the hidden symptoms that others can't "see".
I can't even begin to imagine how frustrating this must all be, I really am trying to understand this better so I can be there for him in the best possible way.
Thank you all for your comments. I really do wish each and everyone one of you the very very best 🌸 x
That is so true I have had MS for 13 years and I still feel that way. My walking is not good at all and if I decide to wait in the car while my husband or whom ever I am with goes into the store, I will watch people walking and believe it or not I am jealous of them. It is a very hard thing for me to fathom that I can't do that anymore (walk). And that goes for anything, I mean when I wake up in the morning and I say well today I'm going to do something but after I go to the bathroom get something to eat take my meds I can be exhausted then I won't do anything. That is so frustrating. That could be what your partner is going through.
But my husband will come home from work and ask me how my day went and I'll say I took a shower and he is so good 😊 he'll say wow that's great 😁 and I am like that's not a lot. But he'll be positive and say if that's all you could do that's ok.
Yeah sounds like he could be going through this actually. He does struggle to walk far, he trips over alot. I think we need to cut down our work load, we have our own cleaning business, don't employ staff we do it all ourselves and he does get so exhausted bless him. I've no idea if we can get help with money if we cut our hours down as he won't look into this either. Don't mind me asking but do you work? Xx
Sorry it took so long to get back to you and the answer is no I don't work any more not that I didn't want to work it s that they let me go and no I have retirement but I worked for the
State and they don't take fica out. Not good. So I am home and can't do much around here. Which is very frustrating I used to do so much. That is the part that I is so hard. Have a good day!
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