Talking to my GF about my M.S

[Anonymous]

I have had M.S for a little more then a year now (got it when I was 18). I am coping pretty good with the whole situation as I have a positive aspect on the whole thing. I do have a problem with my GF as she seems like she just ignores the whole thing which kinda bothers me for some reason. So what do you think I should do? (Quit being so whinny about it, pressure her to ask more about it, just lets things go as they are, or any other suggestions) Thanks.

[MiyaTsuMember]

Hi Kooper10,

I can totally understand why this situation bothers you. It feels so good to know that I can share my MS with my boyfriend and that he supports me in every way he can. It would be horrifying for me to lose that. No matter how strong we are, everyone of us sometimes needs someone to talk to, someone who knows us better than anyone else and someone where no mask is required to hide our fears, hopes and silly ideas. I think it’s important that this someone is our partner, if we have one.

So, here comes my advice:

Maybe you should sit down with your girlfriend when you two are alone and tell her what it does to you when you have the feeling that she neglects yor MS. It is a part of you and this will highly likely never change (let’s hope scientists find a cure to MS soon!). So when she igores that part, she ignores an aspect of your personality and no relationship can cope with that for long, I believe. Maybe she is just scared as hell that this thing called MS could influence her, you and everyhing you two have in common. Maybe that’s why she tries to avoid thinking and talking about it. You should try taking that fear from her. Try to educate her by explaining how MS works and what this means medically for you and your future. Many people are too afraid to overstep their boudaries by asking questions, so just talk and let her listen. And try to be totally open about your feelings, fears and everything else that is connected to your MS. I know this is not easy. It somehow feels like striping and it can be uncomfortable as hell to expose yourself to another person like this. But in most cases it works and is followed by a feeling of security for both parties. I had the same talk with my boyfriend and to this day I do not regret it!

I hope this advice helps, I keep my fingers crossed for you!

[LelainiaContributor]

Hi Kooper10,

I can certainly understand how you would want someone who is in a relationship with you to be able to talk open and honestly about a condition that affects your life and how you live it. It makes prefect sense. That said, the reality is that not everyone has the emotional skills to be on the same page with us about MS. I’ve learned that people will love you as much as they can. What we need from someone and what they are able to give are sometimes two different things.

It may be that she’s just not there yet and that you may have to wait while she becomes more comfortable with the reality of MS in your life. It’s quite possible that she has her own set of issues around chronic, life-altering illness that you may not even be aware of. Or maybe she has NO experience with it and is trying to figure things out for herself.

Leaving the door open for conversation, is a good thing, but I’d like to also offer that you main support person may not necessarily be your partner. For example, my husband is hugely supportive of me and helps me out with day to day stuff as much as he can, but he’s not good with the hospital stuff. (He’s very needle phobic.)My best friend is my go-to person for that. She’s also the one I confide in about the emotional impact MS has on my life. It’s not that my husband doesn’t care about those things, but talking about on the level that I sometimes need to is not his strength. (He lost his paternal Grandmother to MS, so I’ve cut him a huge amount of slack. I imagine he never expected lightening to strike twice.) Instead of faulting him for it, I found other ways to get my needs met. I talk to my best friend and I also joined a younger person’s MS support group. This takes the pressure off our relationship. While your partner is an important part of your life, they simply cannot meet every single need you have 100% of the time. That’s why we have friends and family-we need imput from a variety of people in our lives, MS or not.

I am wondering if maybe in her own way, your girlfriend is trying to maintain a sense of normalicy? Sometimes when people are diagnosed the people in their lives start treating them like invalids, like suddenly they are incapable of functioning and they begin to baby and smother them. Alot of times, you hear people with MS saying that they wished people wouldn’t treat them differently. I guess it’s all a matter of perspective.

I hope things will work out for you. As I said before, the first year is always the hardest. Hang in there!

[Rosie25Member]

Wow some awesome thoughts. I think I have more to take then to offer on this topic. I was diagnosed with MS when I was 17 and my husband was my bf then. When I told him, he didn’t know what it was and didn’t really care to ask. A few years went by like that until we got married and went to Mexico for the honeymoon. I came back and lost most of the function in my left leg. I wish he knew how it felt but as much as he tried, it wasn’t good enough for me. Different people react in different ways…especially when it is something chronic and unfortunately progressive. Suddenly the reality hit him; that some of our hopes and dreams had to be modified like never again will I go somewhere that hot. Totally wasn’t worth it. I was watching Oprah the other day and a woman came on who’s husband had shot her point blank in her face. She said that this was her ‘new normal’ and she had to accept that. That was my “aha!” moment. The only difference is that when you have MS this ‘normal’ isn’t constant so we have to constantly adapt. The harder thing is that so do our partners. I don’t know if what I am saying is making any sense and just brain farting. I think that fear plays a big role in the way she chooses to cope. I wish my husband would come home everyday and sit with me for ten minutes just to talk about my feelings and symptoms of the day but that’s not his character. All I know is that when I need him, he’s there. You two definitely need to sit down and talk about it. I don’t know the nature of your relationship but my husband and I had to sit down and reassess and prioritize our goals in life. When one person has MS it’s like you both do. Tell her how you feel and be open to hearing what she feels even if it may hurt a little. I only wish the best for you and I know exactly how you feel…I think most of us MSers do. I hope I helped at least by saying that you are not alone.

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