How Does MG Affect Your Relationships?

[Mick]

It has significantly negatively impacted my marriage. I know that my wife, just like others, truly does not understand what MG does to me that keeps me from engaging in the activities I used to participate in and loved to do. The fatigue alone keeps me from doing the things we used to do together, not to mention the double vision and other symptoms. She can’t understand, or maybe just doesn’t believe that the fatigue is as bad as it is. I probably would not have believed it either, until I started to suffer from this myself. I’ve told her if she could just spend 5 minutes in my body, she would understand. This disease has turned my world upside down.

[Yasamin]

To be honest I am very afraid.
I am in a point of my life that I would love to start a relationship. But by being recently diagnosed with MG, I don’t know how it would be possible!

I am not responding to anyone’s requests because I don’t know how to tell them about my condition.
Even if I  explain it, I don’t believe anyone would accept it. I don’t want to make a mistake by making a wrong decision although I need someone close by my side.
I would appreciate it if anyone has the same experience and would be willing to share it with me.

Regards.

Yasamin.

[June Robertson]

Oh my goodness Mick, I can sympathise. I’ve had MG for 60 years and was married for 26, then separated. My husband was very kind and thoughtful and I was so grateful, but then I got chronic fatigue after a virus and I think that was just too much! I was in a lot of pain, weak and not a cheerful soul. Came time for our 25th wedding anniversary and he did not want to go out for a celebration saying “I don’t want to contemplate another 25 years like the last 25”. I was shattered at that point, felt terribly guilty, angry and sad. I left the marriage the next year to allow him his freedom. It really did not make him happy, so perhaps it was not all down to me. MG is such a puzzling and variable disease. It will be bewildering for your wife. I found only my late mother, my aunt and one other girlfriend had any cognisance of my difficulties, and maybe only a couple of doctors. We are lucky to have this website to have the occasional debrief! Take care. WE understand.

[Claire M Walsh]

I have a very supportive family, but I too feel that no one really seems to really understand the fatigue we all go through. I have said this before, we just need to keep chugging along as best we can and hope better meds come our way. To the person above who has struggled with this for 60 years, I can only hope you have found joy in hidden places! I had looked so forward to Vyvgart coming on the market as I had volunteered for the trial, but I was booted out at the 11th hour because I was turning 75 the next day.  I started it last spring, but it has not been the boost I was looking forward to. Have any of you had good luck with Vyvgart infusions? If so, please share.

[Martin Kristo]

Thank you all for sharing.I was diagnosed three years ago and I just get sick and tired in the literal sense of even attempting to explain without being a cry baby.
I was divorced after 39 yrs. and remarried only now to feel a burden to a lovely compassionate understanding lady. We have been married for 14 yrs. so she has seen both sides of me. We play the hand we are dealt; but I wish others didn’t have to be part of it.
In two weeks I see my neuro Dr. again and have the same hopes of Vyvgart that the previous participant shared.
We feel alone until we read shares from others who really know and experience this disease. Thanks to all of you.

Martin Kristo

[Jana]

I have had MG for 22 years since age 28 and relationships have been extremely difficult.  Romantic relationships and friendships have been next to impossible to hold on to.  As we all know it’s so difficult navigating this illness alone.  The feeling of not being understood has plagued me from the very beginning.  My own family never even tried to understand and made me feel like I was lazy or making things up despite all the procedures and treatments I’ve endured.  In the last 8 years I’ve finally felt more understood by them.

I’ve never been the kind of person to have many friends, just a couple of very close ones and throughout my journey people that claimed to be best friends disappeared.  I believe a lack of understanding and not being able to do activities with them caused them to disappear and, of course, that has been so painful.  I would love to have a romantic relationship, but I’m terrified that no one would want to take on my struggles so I don’t put myself out there.  I’m practically homebound so who would want to take a chance on me?  It’s not exactly a ringing endorsement for online dating.

I’m going to be starting Vyvgart as soon as my insurance approves it.  Putting a lot of hope in this drug that I can get to a point of at least being able to bathe without difficulty, run my own errands and just have some semblance of a meaningful life.

I hope all of you are able to create a wonderful life despite our challenges.  Thank you for being here to vent to.  Best wishes.

[Maria]

I’m new to his world of MG! It’s been 5 months! 4 ER visits and a week long stay in Dallas for treatment.
December 10, 2022 I ran a 5k and the next day my husband ran a marathon. That was my first day of noticing the double vision.
Since then my husband has been caring for me nonstop! I sometimes wonder will he tire of this? We have been through this together, he gets so frustrated with the doctors and all the side effects of the meds.
I used to be his caregiver, he suffers from TBI (traumatic brain injury) from combat! Now he cares for me!
I’ve lost 40 pounds since December, I was really overweight! I’m still considered overweight, based on my primary doctor.
but, my husband has gone the extra mile to make meals that I can hold in and drinks that will replace my nutrients.
I can see the fear in his eyes and that breaks my heart.

He has been so loving and understanding from day one. During my hospital stay, a couple of times he had to help me with my personal care in the hospital.
we are stronger than ever. Married 30 years.