How did everyone actually come to terms with their diagnosis.
Asking on behalf of my partner who is really having a tough time dealing with this.
He was diagnosed 4 years ago and most people are not aware of his situation as he is trying so hard to hide it. It's eating him alive, bringing him down and having a huge impact on our relationship so I'd like to help him try to deal with this the best way we can before it breaks us completely. 💞
Thankyou all in advance xx
Written by
bandicoot1987
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When I was diagnosed over twenty four years ago I was diagnosed at the same time with lung cancer ♋️. I went thu surgery to remove right lung and had a surgical stroke 🥵. This put ms on hold for quite a while and everyone kind of forgot about it but me. So as time went on it came back to light and everyone was made aware of it. It was so much easier being out in the open and deal with it👍. I think openness is the easier way to go 😉. That way everyone knew what was going on with me and didn’t have to explain all the time. I hope things work out for you, it’s hard. Stay positive and keep a good attitude 👍🙏😉. Ken 🐾🐾
I know it's not going to be easy for him, I'm trying so hard to help him come to terms with what's happening, having that mixed with depression is so exhausting.
But I agree I honestly believe that he will feel so much easier when he can be open about it with people.
I hate having to lie to my family and friends. Fingers crossed once he feels comfortable enough to open up our relationship may get back on track xx
I was diagnosed with MS about 10 years ago,Type 1 diabetes about 30 years ago. I was glad to have an answer as to why I felt the way I did in both cases.
Read as much as you can about MS so you don't feel so lost and at the mercy of what a doctor tells you to do. There are choices out there and that gives one some sense of control.
The diabetes diagnosis at age 25 really pissed me off. It took about 4 years,but I finally figured out how anger can be a great motivator and started an exercise regimen.
I can't stress how important ANY exercise is....diet too.
If he is able to move about,DO IT. It will lift his spirits! If you are unable to exercise, learn something new.Anything like that can take your mind off of negative stuff,at least for awhile.
Practice mindfulness.meditate,try yoga.There is a book out there on yoga for MS.Maybe that is something you can do together.
I am not shy about mentioning that I have MS if I need to.Other times, I like to let them wonder if I am drunk.
MS is not a fun thing to have and it will test you but those tests often show you how strong you really are.
Your partner might not think so right now but he's tougher than he thinks.
He absolutely is. We've been together for 10 years, I know he's capable of so much more.
Exercise is a fair shout, we seem to have gotten quite lazy lately so I'll kick that back in to fashion 👍
He says he feels embarrassed having ms, and he's ashamed 🙁 I hate that he feels this way, but now I really am going to do something about it, or as much as I can to help him.
I like your comment about letting people wonder if you're drunk 😂 if only more people had that attitude. Fair play to you.
People ask all kinds of stupid, intrusive, goofy questions regardless of who or what you might be dealing with. It just is what it is.I figure if they have the nerve to ask such questions, I have the nerve to answer them with the craziest response I can think of. I am after all, in it for the laugh.
Besides, these people that react in weird ways have their own stuff and people to irritate at home or work and probably won't be thinking about my condition an hour after they try to offend me. .and if they are? So what.
Why be embarrassed or ashamed about something that tests one's strength?
Hi, the fact that you are reaching out to seek inspiration to help your s/o cope with MS is the first step.
As far as facing my reality of MS,I am not sure I have. I just do what I can until I can't. For me being told " no, you can't " " stop, I will do it for you." These things are not supportive. What does help is " so what's your plan or goal?" " is there anything I can do to help?" When it's warm out, my husband always brings along an umbrella for shade and a water bottle with ice. My son made me a powerful hand held fan that I can put in my bag. My kids will tag along in the store and help me get stuff,start my car and blast the air conditioning. These are all things I need to keep functioning and I always forget to do them. My family helps me feel supported but capable. This has taken us many years to get to this point.
I know 4 years feels like an eternity and that your s/o should start to accept MS. I have been diagnosed for 11 years,sick for 13 and I do not accept MS .
I have learned to co-exist. MS can't take me out of my life if I self preserve. However, my family will still help me to remember " to put on the breaks" when I am over doing. They remind me what happens if I don't pace,I am stubborn and always fight back, I don't want MS to own me. I have only recently been better at respecting their cautions. As I said coming to this place takes time.
I know my husband&I attended MS work shops together after year 3 and sporadic couple counseling,MS weekend workshops etc... things started to get better between us once he learned what I was going through and had some tools to help me with and I trusted him with my fear.
MS causes you not to be able to trust or depend on your body to function properly. This is scary,frustrating,embarrassing and makes you feel unsafe and utterly useless at times. If you don't have MS and all its invisible symptoms,you can't really appreciate the challenges. Complicate that with no 2 MSers are the same.
Learn all you can, love him where he is at. He needs to process and grieve his " I used to". That takes time.There is a light at the end of the tunnel. Good luck,I-hope this helps.
G'day bandicoot, nice animals bandicoots I suppose you have looked into them. Is your partner doing anything about his ms? Taking medicine or doing any research or as I may suspect being in denial, which is fair enough we all cope differently. I would ask why exactly is he embarrassed and ashamed about having ms? I am very sure that he did nothing to catch it, not that you can catch it. I assume you both have taken long walks on the beach and discussed this. His answers would give you some insight as to his thinking.
Had you thought of couples counseling as a way to open up and discuss both your feelings towards ms?
Everyone handles this diagnosis and the disease itself so differently. It sounds like he may need a little help in developing good coping skills. It isn't easy to accept any chronic disease, but I do wonder if some counseling or an in-person support group might help him with this. He's blessed to have someone who cares about him and is there for him. I'm sure you've communicated to him your commitment. While we don't yet have a cure, we have options in treatment and options in how we choose to deal with this. I hope you both find a way to help him to feel empowered as much as possible.
I was diagnosed 5 years ago, but have had it for a long time. I periodically cry and say it is very tough. Today, my husband told me it's tough on his end as well (usually he just says I didn't ask for it). I am hopeful for some progress in treatment options. Think about the progress we have already experienced - the first (albeit wrong) MS DMT was invented in the 90s. We've come a long way. We just have to stay positive. Yes, exercise of any kind helps, but Pilates and yoga specifically delay MS disability progression. And it sounds like a lot of people here have lousy MS doctors. Get a second opinion.
It sounds like he was diagnosed shortly after me. Does he have any hobbies or interests? For me, discovering something I CAN do helped take my mind off things I CAN'T do. Perhaps if you two can work on something interesting together it may help. Let him see that he still have value and he can still be creative and interesting. I'm sorry it's taking so long for him to recover from the shock of the diagnosis.
Hopefully he will be able to open up and tell people who may have noticed that he is different and be worrying about him.
He's still very able to do everything, it's not affecting him in any way at all apart from his speech sometimes, he does suffer awful with an achey back but is fully mobile and we are still working almost everyday (we have our own cleaning business) ☺️
I researched what I could do for myself because I didn’t want to end up like end stage MS; which of all the things I cared for as a nurse, was in the top 10 of my most dreaded assignments 😵😭I announced the day I was diagnosed to friends and family via text or FB messenger because I didn’t want to have the conversations, and I still don’t, but I feel compelled to give an annual update because most people don’t have a clue about MS at all and it counts as MS awareness effort (#doingmypart). When my patients asked why I “only” worked an 8hr shift, I was honest. There’s nothing I have to hide or be ashamed about. If someone can’t handle it or feels like they need to make a face or comment...that’s on them, not me. I did have a few relationships end or change that first year, which was hard to go through, but good riddance to energy sucks who I don’t need hastening my journey to the wheelchair (that is NOT a negative statement, btw).
I don’t have any sage advice for you. MS made me take charge, but it probably comes across as being a selfish a-hole.
Oh well 🤷♀️ 💅🏻
I hope you find resolution soon. Sometimes MS can do all that to someone even when they are open about it. It takes a ton of work and support to tread water. Kudos to you for sticking it out and asking for help! Lots of love to you!
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