Just after some support or advice. I have been living with MS for around 15 years, with symptoms worsening in the last 4. To add insult to injury, my husband (who I met wears before my diagnosis) has also now been diagnosed with MS. He is on a clear treatment plan, I am as yet untreated. We have 3 children under 8, including twins, and I work full time. Just generally struggling with life, and in addition overwhelmingly angry and sad that this has happed to us both. I just wondered is anyone is/has experienced anything similar. It is frustrating that our connection with each other and they way in which we met was not due to MS at all, however it seems to have found us both anyway. It is beyond unfair and I am so angry and sad with life. I have been avoiding addressing the issue for such a long time and any help is much appreciated.
Hello, and welcome to the Forum.
Joining us is probably the best thing you could have done, as avoiding the issues (and I can appreciate what they are) isn’t going to help. Although I am not in a similar situation I can see how you feel that fate has dealt you a rubbish hand.
For both partners in a relationship to have MS is particularly cruel, but have you considered that you are much better prepared to understand and support each other? That’s something that doesn’t happen in many relationships.
There is one thing I can promise you and that is you will find a get empathy, wisdom, and comfort from this Forum. Other contributors will have their own take on your situation so I’ll stop for now.
With my best wishes,
really sorry to hear about your situation, that must be really tough. I can only imagine how angry you must feel. Addressing the issue is vital even if that only involves clear and open communications between the two of you. You also must ensure that you both have access to a great team of family, friends and medical professionals so that as things change you can get the best help quickly.
All the best
You have every right to be angry. Don’t beat yourself up over that. Acceptance of the situation can offer some relief to having MS, however, this may involve outside help. You’ll need to investigate services in your area, this can also be frustrating, your GP may be able to help or your MS nurse if you have one. I would just like to offer some words:- You and husband may deal with this differently, discuss this now and respect each others view. Talk to your children they are more resilient than you think. Seek outside help for your children, it will give them something away from MS. Especially if they become young carers. The local authority can help with this. Finally, it’s ok to feel angry & depressed about the situation, allow yourself, don’t fight it. Then, I believe, if you accept, your perception will change & positivity will naturally happen. There’s plenty of good advice & tremendous support on here. Sending all love xx
Can I just add to the comments that have already been made? Don’t forget that you and your husband are at very different stages, not only in terms of the length of your disease, but also in terms of acceptance of your personal limitations.
I’m sure that you are both furiously angry that this buggeration of a curse has been laid on both of you, so do talk to each other about how it makes you feel (some men, even some people, find that more difficult than others of course). But also, you probably both need someone to talk to alone, someone with whom you can be honest and who’s feelings won’t be hurt by anything you or he has to say about the situation you’ve found yourselves in.
Don’t forget that your MS is going to be different to his. He may be one of the lucky people who get the right disease modifying drug (DMD) for him, and who is therefore going to remain more or less symptom free for a long time.
You’ve said you’re not on any treatment, do you have relapsing remitting MS? If so and you are experiencing relapses, perhaps it’s time for you to be on a DMD yourself. On the other hand, you may have a progressive form of MS, so that’s not possible.
Do try not to measure yourselves against each other. There’s a temptation to compare ourselves against one another. To feel aggrieved that X is less disabled than Y and so maybe they should be doing more within the family. Or that perhaps, because he gets a decent DMD and is able to stay relapse and disability free, he won’t understand just how it feels to be you.
I do feel for you as a family. It’s bad enough luck for one member of a couple to be struck by MS, but for both of you, it just seems utterly unfair. You have my sincere sympathy.