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Can't hide from the past...
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An_257617 posted:
I was diagnosed with MS in August of 2012. I started my treatment in October of 2012. 5 months later, my husband told me he was leaving our marriage. This wasn't completely shocking, considering he left me in the hospital in August to play golf while I was receiving steroid infusions for the Nystagmus I developed as a result of my first "attack". He said that I didn't appreciate the stress MY diagnosis put him under. Needless to say, the end of 2012 and the beginning of 2013 wasn't a great time for me. However, there is a silver lining to every cloud....

After my divorce was finalized, out of nowhere, I met an amazing man...a mutual friend of a friend whom was already aware that I had MS. Within 3 months of seeing each other, he formed a team for a Bike MS event in my name and was a fundraising fool! It was the sweetest thing...something I didn't ask for and definitely didn't expect.

We live together now. He is the most amazing man I have ever met... things couldn't be any better. As we get more serious in our relationship, I've noticed that I speak less and less about my MS...I'm almost hiding it. It's as if I'm afraid he will remember that I have this issue I will deal with for the remainder of my life...and I'm afraid he might leave too. I can't shake it. He has researched the disease, has taken me to doctor's appointments, seen me take my injections,etc., but for some reason, I'm afraid one day he will wake up and realize that this disease is unpredictable...

I want to sit back and enjoy my new relationship and forget about the "what if's"...but that seems nearly impossible.

Any suggestions?
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hackwriter responded:
I was abandoned by my husband a short time ago, too, because of the disease, and your concerns are the same I've entertained as well.

One thing that sounds encouraging about your situation is that he is so involved in your disease management. This means he accepts your MS.

Question: Are you talking about the MS less and less because it isn't an issue or a focus right now? Or are you consciously holding back talking about it? You might not feel the need to talk about it all the time, that would be normal. But if you are holding back, afraid that he'll change his mind about the relationship, then I think you should tell him that.

One thing I did do during the six years with my husband was give him an opportunity to come clean once a year. I would say: "Honey, it bothers me that I can't share your physical activities like sailing, things that mean a lot to you. How are you feeling about that?" Each time I asked, he told me it didn't matter, he loved me and would never leave me. At the end of six years, he told me it did bother him after all. He hadn't been honest. I know it was because he loved me and he wanted it to be okay. Having negative feelings towards a disabled spouse makes them feel like they're not good people and they push those feelings away. It's so complicated. I had MS when we met and it was okay with him then. But I did get worse while we were together and that might have contributed to his growing resentment.

When my husband and I separated, I saw a therapist right away. The most important thing I took away from it was that I should have expectations in a relationship/marriage. I wrote out a philosophy of marriage, what I expected from my mate.

I decided that I would put everything on the table next time around, including my anxiety about being abandoned, and ask him to do the same. It does no good to hold back, this is too serious an issue. And i would put it out there in great detail, including discussing the possibilities of disease progression and the challenges we might face: the mobility aids, the care-giving, changes in sexual intimacy, etc.

Full disclosure also does not ensure a happy outcome. But look, it's a big risk for able-bodied couples, too. There are no guarantees.

Which brings me to my ultimate pearl of wisdom: A new relationship is always going to be a leap of faith. It is for everybody, for able-bodied couples, disabled couples, and mixed couples. Without making that leap of faith, without trusting them, we can't fall in love and sustain that love.

So tell him what you wrote here on the forum. If he reassures you that everything's okay, and if his actions match his words, then trust that he's being up front with you. That's all any of us can do.

Good luck with your new relationship, it's awesome that found a new love. Enjoy!

Kim
 
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An_257617 replied to hackwriter's response:
Kim,

Thank you so much for your response. It was extremely helpful. I sat down and spoke to my boyfriend and told him how I stepped out of my comfort zone and posted online in order to receive insight from someone whom is dealing with the disease. He read my post, and your response. He said that he believes my feelings are completely normal, but that he wants to do whatever he can to convince me that he is up for any challenges the future might bring. Although I have what my doctors call "minimal disease", he knows that there are no guarantees. We spoke at great lengths and my anxiety has been laid to rest. I'm sure any negative thoughts will continue to be laid to rest as long as I remain honest with him about my feelings. Keeping these thoughts to myself can only do more harm as he said he knew something had been bothering me lately.

So, once again, thank you so much for your in-depth response. It was more helpful than you will ever know.

Best,

Caitlin
 
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kennyandcathy replied to An_257617's response:
Hello everyone,
I joined this community because of my husband. My husband was diagnosed with MS at 23,he is 41 now. We were just recently married (June 14). This is how I see it, I am in love with HIM. He is not defined by his illness. There are times where he gets frustrated and angry at his disease because of things that happen. I knew going in what I signed up for. I get frustrated with him but not because he has MS, its all that testosterone (lol). Sometimes I feel like I am too protective or controlling and that is where I struggle. I don't want him to feel babied, I want him to have his dignity and as much control and independence as possible. Before we were together, he had seemed to stop caring. He would go to appointments and take meds when it suited. He has always been very independent and has a hard time accepting when his body won't cooperate. He really didn't advocate for himself. The greatest struggle he has now is that he is in a wheelchair more because of falls. He had been using a walker but is having issues with arm weakness. He wants to walk again, and in fact is getting ready to start Ampayra and Ty'sabri. Anyway, I was writing to tell you that there are people out there who do care. Many blessings to each of you and much love.
 
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jules1202 replied to kennyandcathy's response:
Many hugs to you as 2012 had to be a very rough year for you! I just wanted to share some thoughts - I wouldn't focus on your MS being the issue that broke the relationship because it wasn't. You said he was golfing during your diagnostic appointment (long before the "real" struggles ). It sounds more like he was showing he had issues and was selfish.

I am having a bad mush brain day today so I am not wording what I am trying to say well but I wanted to share a simliar yet totally different example with my ex. Long before all my physical issues I was married to my ex and pregnant with my now almost 15 yr old and my ex left me in labor for 4 hours to go get lunch off the hospital property (and back then we had no cell phone). A couple years later our sweet little boy was in the ICU for two weeks and they didn't know if he was going to make it or not (praise the Lord, that kiddo has been healthy as a horse since then!) and my ex stopped by for 5 minutes every few days to visit and other than that went on with his normal life (we were still married then) and nothing other than that.
Long before I started getting truly sick he was gone and my life is much better. My point was it sounds like your ex was selfish and I am betting that would have eventually been an issue whether you were DX'd with MS or not.

I know its scary to try again after being burned but if you think you are mentioning your MS less because you are trying to hide it out of fear then you probably are. As you get more invested in the relationship you probably feel you have more to lose so you want to protect it and since in your mind MS caused the last breakup...... Well I can easily see where you would start doing that. (I have been guillty of hiding things from my DH because I knew they upset ex or were an issue when we broke up so I totally get it).

Your MS isn't going to go away though and it sounds like this guy isn't afraid of the fact that you have MS (he sounds like a good guy so I would encourage you to seek out some councelling to help heal those old wounds so you aren't carrying old hurts in this new relationship.

I hope that helps and I am sorry my post is kind of rambly.


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