Myasthenia Gravis Support Group

Well I would love to answer this one for you and I will add more later, but right now I am off to the doctor.

Let me just start by saying the STRESS is our enemy and sometimes ppl just don't understand us MG'ers and believe that just becasue we look normal on the outside, does NOT me we are on the inside.

In that I mean, inside of us we are going through many symptoms and others do not notice. I am not a great one to answer this, because my husband left me about a year after my diagnosis due to the fact he could not handle what was going on with me!! In fact I could NOT handle it either, I don't think he knew how hard it was on me to not be able to do the things I used to do, and I had 2 kids at home who also needed me. I was diagnosed 2 months after the of my son.
Again, I would like to go more in depth with this because I did go through therapy to help myself, but I have to run for now.

I will add more later!!
Kim :)

i mean i understand its not easy but sometimes i think that im blamed for all of her individual problems and its a constant blame game you know.

I think disease is one of the biggest strains on a relationship. Before I was sick I was carrying all of the weight of house keeping, getting the kids of to school and home, and working a full time job. My symptoms have gotten so bad that I am currently unable to walk unassisted, let alone do any of the other things that used to be my "job." My husband and I were at each others throats and 4 weeks ago, for the first time in 13 years, my husband slept on the couch. The next day I broke down and cried and he said "why are you so angry all the time?" I said "I am angry." I'm angry that it took so long for the doctors to figure me out, I'm angry that I have no independence, I'm angry that my children are frightened by my sickness, I'm angry that I can't cook and clean when I want to. I feel like a huge burden. He said it's okay to tell me those things just don't yell at me for things that you aren't mad about. When I realized I had been doing that I was able to change the way I looked at everything. If you want to keep your relationship I would recommend that you start a conversation pointing out all the things she has done/sacrificed to support you through this and then explain to her clearly what frustrates you about your disease. If you can focus on what is really bothering you and reassure each other that you still love each other it is easier to forget the past arguements and move forward as a team. My husband and I are now fighting this disease together as a team and I have stopped being critical of how he does "my" job:) If that doesn't help you may want to join a local support group for people with chronic illness or see if she would be willing to go to couples counseling. Don't let MG destroy your relationship, it already takes so much from us. I will keep you in my thoughts.
Jen

I totally understand how much this disease will affect our relationships. I was dx'ed a couple of years ago, but that neuro hemmed and hawed about it to the point that I thought I didn't have MG. After quite a few collapsing spells she decided to send me to Duke for the Single Fiber EMG which tested HIGHLY positive. My husband actually went to the appt. with me and was surprised when he found out how sick I actually am. It threw him for a whirl and we have had some issues since then. Before he would console himself by thinking that I had magically gotten lazy overnight. That all the breathing and bronchitis, flu issues were just me wanting some down time. Not anymore, now he has to face the fact that I really am quite ill. They say $ problems are the hardest for relationships, but I think illness should be moved to the top of the list. It is hard on our partners to see us suffer and to take on extra chores. My husband is trying, but it is a work in progress. I wish you the very best and hope that you all find some understanding very soon.

I'm glad you brought this up, because I think this affects more people than you'd think. MG is a double edged sword for a relationship. One the one side, it causes relationship problems and on the other side, it makes your symptoms worse when you get stressed out.

After I was sick for about 9 months, my husband and I went through some serious problems and we almost got divorced. Luckily, we were able to fix it. I can't say that the fixing it won't stress you out and won't make your symptoms worse in the meantime. Working on relationships is hard. But once you get past it, the stress will pass as well.

I don't know that it is the same for everyone, but in my relationship the problem was the when I got sick, all of a sudden everything was about me - my problems, my sadness at being sick, my treatment. I wasn't giving anything back to my husband. He wanted to take care of me, but then he felt like he was suddenly 80 yrs old and he felt like he would never have fun again. Once I realized that, it sorta pulled me out of this funk. No, I couldn't do things I could do before, but that doesn't mean we can't have a good time together and it doesn't mean I can't try to listen to his needs.

The funny thing was that I changed for him, but it turned out that it was what I needed, too. No one gains anything from pitying themselves all the time. MG is a life-long illness. You just have to learn to live with it as a part of your life and figure out how to make life worth living anyway. You have to grieve for what you lost, get used to the changes, and move on. And I, personally, wanted my spouse to still be there when I was ready to move on.

thanks for the good input from you all. I dont feel bad for myself cause i still cook clean wash clothes i try to go out lol. But sometimes that gets to be a strain and like the above post sometimes we feel old becuase of this. But i really do appreciate the responses.