Relationships
 

I am curious how this has effected your relationships... whether girlfriends, boyfriends, husbands, wives, friends, etc.

I've found that my friends don't really know how to handle this and most have been scarce. I am a bit of a loner, so I only had a few close friends, but I find them just not around anymore. There's a lot more to it, but I also had my reconciling relationship end just 1 day of being released from the hospital. One of her complaints, and like I said there were other issues, is that I talk about MG so much. Keep in mind I've only had symptoms since the end of August and have only been officially diagnosed one month, yet have already been in ICU with a crisis.

How do you handle this from consuming your life?

I have been thinking about this very same thing -- and In fact it is the reason I logged on to the site tonight, to see how people have learned to adjust. I received my confirming diagnosis about the same time as you did JerzyBoy. Fortunately for me I have not been to the hospital, so I don't know what you have been through.

But on this subject, I let some people know about my MG -- people that I had worked with previously and had displayed symptoms in front of them, before I knew what was going on. I reached out to them to say hello, let them know that the mystery was solved, and that I was hoping to be better soon. The overwhelming response was -- silence. No one reached out to me or even communicated in any way.

And to tell the truth I was pretty sad about that.

My husband has been pretty great, but I know I talk about it too much. There are some many things that are different now and I am trying to get my head around it all. I talk with him about it, but I know there is a limit to how much any one person can hear. I feel bad about doing that to him.

One of my recent daily goals is to see how much time I can enjoy in the day without circling the wagons in my brain back around MG.

I know that as time goes by that I will get more used to this, but so far, I am struggling.

I too an interested in hearing from others on this...

I can say that if you have a true friend you can tell because they will be there for you. Other than that, the friends I have are however not true friends. They have all left my side. Excuses like, we can't call because we don't know if your able to speak....
But I can listen....
Though they can't see that fact. They blame it on me often for not being able to go out nights. I have lost soo many supposedly friends after I was diagnosed. Some even had the nerve to ask if MG was catchy. Even family members asked that. Some stories I have read people do have true friendship, and they are there for them 100%. Haven't experienced this. Its sad. truly sad.

I have found all of the above to be so true. If, (key word being if) someone asks about MG or how I'm doing, I see their eyes glazing over before I can complete a response. Spouse, adult children, friends, neighbors - basically all the same. I'm still waiting for at least one person to say "hey, tell me more about MG"
Much to my surprise - I've even noticed it at our local support group - whatever I share, others interject and interrupt to let me know about their MG. Disappointing.
But, I attribute others' behavior to just human nature and have slowly learned to roll with it. Very slowly.

relationships
 

After reading the responses, I don't think that it is limited to MG.

We have to understand that other people have problems of their own.

We have to accept that and fight on with courage and faith.

Ditto
 

Ditto to that. While I am thankful that I continue to get invites to activities, it is clear that people do not understand my refusal at times...and it is true, people do not seem to want to hear too much about one's ailments. I also agree that it can be quite hard to not focus on it all day...Heaven forbid that I feel well-that is almost as disturbing!

Hi Jerzyboy,
I don't have MG but agree with the folks who said this also applies to other illnesses. I was dx'ed with cancer this year and also found some family members just went silent. I do have a best friend who is always there for me and she thinks, of those who have turned away, it is not being mean, it is being ignorant...they don't know what to say or do, so they do nothing.

It also sounds like you may be young and I think younger people(25 and under) may not have the compassion or patience for dealing with illness. By that I mean, as we get older, like me, we deal with more illness in ourselves and our friends and (hopefully) get more compassionate with age and experience.

I am sorry you have experienced the insensitivity of others and are dealing with what sounds like a difficult health issue.

On that note, with those of you with MG be willing to share how MG affects you in your day to day life? Jerzyboy, I don't mean to steal your thread, I was just hoping some education to others who don't have MG would help. I read the Wiki pages and a few other sites but, MG can affect so many things. What has it altered for you all? hobbies, jobs, does it affect ability to exercise, to walk, to talk, to eat, to care for oneself etc? Are their involuntary movements? embarrassing movements? What kind of crisis do you have that would require a hospital visit?

Thanks so much for educating me, and others....I don't know anyone with MG and would like to be sensitive to all of you and understand.

Thank you,
Diandra

All of the above and then some.

A Myasthenic crisis can at times cause breathing to become extremely difficult and you may be unable to breath unaided.

I was diagnosed shortly after being back on the dating scene and have ahd some mixed reviews. I had a thymectomy so I have a big scar down the center of my chest now and the funny thing is, women don't seem to mind. A couple of them actually seemed quite intrigued like, if this didn't kill me, I must be pretty tough, LOL.

It can be deal breaker to. I sometime struggle with the idea of starting a new relationship when I really don't know what my future holds. I am untreated for MG at this pouint because nothing is helping yet. The future is very uncertain. I find it difficult at times to bring someone down that road.

I did not tell anyone except for my family for many years. I also tried my best to not let MG be the center of my world. When I had to medically retire as an attorney, I told people that I just quit. When I could no longer carry my surfboard up the beach, I let the cat out of the bag. Expecting the worse, I got the best. One dear friend immediately told my husband that if anything ever happened to him, his family would take care of me. Although most of my friends don't understand MG they now understand that it isn't them when I refuse an invitation.

I've known I had something since high school but the symptoms weren't too bad that was 90-91 I just altered my ability to work. Then in 05 it got to the point I couldn't pick up my new born son and that's the year I was diagnosed mg positive and put on mestinon.my family knows but I don't talk about it unless they or someone asks. Most of my friends do not know I have mg and are surprised I do cause I do all my normal activities and am considered a work-a-holic. So far the one and only crisis I've had was in the back of an ambulance and they just proped up the back that helped tremendous.

We all want to fit in. It's human nature. Many people will comment if it's an illness they can relate to. If they can't it's often common to see them go quiet. It happened when I lost my mom as well. Those that lost a parent or close loved one had to tell me their story. If you can relate then we could move past it together. If not then it got uncomfortable and I felt they wouldn't understand and they didn't know how to help as a friend. It creates a gap. A few of those gaps and you can still be friends. Too many gaps and you feel you are no longer connected to the person and it's easy to see lifetime friendships go away because we no longer feel we have things in common.

I have found if I try to close the gaps with other things we had or could have in common the. I can save a friendship. Maybe just go to lunch and talk. If it's shallow and one sided it probably won't last. That's true of most relationships I think...

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Eye
 

People mainly ask me because I wear a patch so I don't see double. I went from perfect 20/20 vision to severe horizontal and vertical double vision and blurriness. Although I am now swallowing close to perfect and having just low end MG weakness, my vision has not improved at all. I get no break, ever. From the time I wake up until I go to sleep, my vision is bad. I am really hoping that there is something that eventually can fix this, whether meds, the thymus removal surgery or time. My GF that left me the day after I got out of the hospital after only visiting me once in ICU and dropping me off at the ER still hasn't spoken to me much. We much civil small talk and I miss her, but I'll never understand how anyone could walk away at that point. Especially after over 6 years living together. We had our issues that we were reconciling, but I could never walk away from someone at such a horrible time. But I guess all people are different and eventually I'll find someone that truly cares about me, MG or not.

Friends
 

Friends, when will I ever learn!

I finally broke down and sent a message to a friend of many years which told her about my having MG. I thought this would offer an explanation for me being kind of quiet in the communication department lately. We have been good friends for almost 15 years.

There was no reply from my friend to my email two days, which is not typical. Today on Facebook my friends only post is a cartoon about "letting go of toxic people is a major step towards being happier..."

I think now I am regarded as "toxic". Sigh. I don't think people want to know when you are really sick with something that is difficult and hard.

"letting go of toxic people is a major step towards being happier..."

This of course being so true. Your former friend being the toxic one not you time for you to let go of that particularly noxious person.

Most of my friends have stepped up quite graciously. We rarely discuss it and I just go about the business of day to day living without complaining.

I find that the more I discuss my MG, the more I give strength and it seems to loom even larger. I try to down play it as much as possible so my friends won't treat me any different than they used to.