Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi.
I'm 22 year old university degree 2nd year student, I'm a perfectionist-trying-to-change, and I have MG, diagnosed 2 years ago.
Sternotomy and thymectomy done but symptoms worsen after surgery.
I've been giving my best in my studies and in coping with the hectic life in my campus but most and nearly all of my classmates and even some of my lecturers think I'm faking my disease and using my disease as an excuse.
I'm an outcast in my class.
I was hospitalized twice in March (last month) because of URTI (upper respiratory tract infection) that lasted for more than 3 weeks due to lack of rest and I overworked.
Because of that, after I came back from the hospital, I had to rush to finish a few assignments and I could only sleep 2-3 hours a day, which is very dangerous for a person with MG.
Just recently, I overheard that my classmates are going to nominate me as the class monitor or the assistant monitor really soon. The workload of a monitor is very heavy. I really need some advice to reject being the monitor.
I'm afraid because they've been mean to me since the beginning.
They bully me verbally and backstabbed me.
I know it is hard for normal people with good health to understand my condition. No matter how much I explain, they won't listen.
What should I do? How should I put my words together and speak humbly?
I'm 22 year old university degree 2nd year student, I'm a perfectionist-trying-to-change, and I have MG, diagnosed 2 years ago.
Sternotomy and thymectomy done but symptoms worsen after surgery.
I've been giving my best in my studies and in coping with the hectic life in my campus but most and nearly all of my classmates and even some of my lecturers think I'm faking my disease and using my disease as an excuse.
I'm an outcast in my class.
I was hospitalized twice in March (last month) because of URTI (upper respiratory tract infection) that lasted for more than 3 weeks due to lack of rest and I overworked.
Because of that, after I came back from the hospital, I had to rush to finish a few assignments and I could only sleep 2-3 hours a day, which is very dangerous for a person with MG.
Just recently, I overheard that my classmates are going to nominate me as the class monitor or the assistant monitor really soon. The workload of a monitor is very heavy. I really need some advice to reject being the monitor.
I'm afraid because they've been mean to me since the beginning.
They bully me verbally and backstabbed me.
I know it is hard for normal people with good health to understand my condition. No matter how much I explain, they won't listen.
What should I do? How should I put my words together and speak humbly?
You could say something like: "I appreciate the nomination but due to the added workload, ontop of a chronic illness, I simply will not be able take on the extra workload and will have to humbly decline the nomination. My only goal at this point is to complete my studies successfully. Thank you all for your support and your faith in me."
Something lilke that depending on your style. I know its a bit harder at your age, but try and ignore the peer pressure and the backstabbing, over time you learn that its just childish behavior and not worth your emotional energies.
Take Care
Joe
Find others to focus on.
I know it is hard to deal with. I understand your sadness.
Don't live down to others expectations.....live up to yours.
Take care of yourself.
Your health is in your hands.
I've been asked to do lots of things too in my volunteer life and had to learn to say no. I spend a lot of time reading and watching TV and am not as able to go out in the evenings anymore. But with being careful with my energy use, I am still working full time and doing a few activities that give me joy.
Good luck with your graceful "No, but thanks for thinking of me".
Flutebell
It gets easier to say no. Surround yourself with like minded people.
Good luck in your studies; I am proud of you for making an effort! You can do this! Big hug!
Your university likely will have people whose job is to make it easier for people exactly like us. Get them working for you!
~joe
However, recently I realised that in my class, no matter what and how I say things, I got backfired.
They said things like," Don't you think you're selfish? You're not the only one here who is aiming to complete your studies. We are also here to complete our studies successfully. Don't use your sickness as excuse. Are you sure you're fit for this job?"
This time, thanks to one of my classmates who is influential enough to back me up on this. Whatever he says, the whole class will not have the courage to disagree publicly. He even helped excuse me from all other committee posts.
@annkemp, thank you. I often tell myself to have the courage to live a life true to myself, not the life others expected of me but it's so difficult. My health is not in my hands unless I really have to courage to take full control and shield myself from all those verbal bullies.
@flutebell, thank you.
Unfortunately, my campus doesn't have such support group. =(
I've recently started one secret support group myself on Facebook but it has to be low profile and I can only add those who are not only sick but trustworthy in.
@barbel, thank you.*hugs back*
@barbel and @Joe Fodor,
There's 17 people in my class but only one person who is willing to speak up and support me.
Some of my classmates actually used me as a black sheep. They would always try to find ways to find faults in me and I have to be very careful with what I do and what I say. Yesterday, both my classmate and I were on our way to the PIC of hostel office. Both of us wanted to apply to be excused from reshuffling of our hostel rooms. When she meet one of our classmate who saw us walking to his office, she seemed afraid and quickly pointed at me and said,"SHE wanted to deal with the PIC."
After we went to see the PIC, she asked me not to tell anyone that we went to see him together. She often repeat this to me," If people see us walking together or going out together, they will surely gossip about us", "Our classmates hate us but they hate you even more". When she wants to go out to eat, to watch movie or buy things, she would come close to me, spend time talking to me, and walk with me. (Because I can drive her out. She doesn't have a car.) When she doesn't need me, she would walk very far away from me. Sometimes my weakness sets in, I can only walk very slowly (Sometimes like a penguin), no one's willing to slow down to walk with me. She passed me by and said,"Can you walk faster and stop walking like a weirdo.You look funny. Don't show that you're sick for people to see."
@Joe Fodor, really? MGers are considered disabled? Is it an international law?
Hm....but I can't apply for that. It will make way for certain people to kick me out of campus by claiming that I'm unfit.
One of the administrators in my campus said,"Since you're sick, you'd better go home and stay with your parents and just find a simple job."
I felt hurt hearing that. I've been struggling so hard to complete my studies and yet she said that.
I'm already halfway through my degree. 2 more years left. I will persevere until the day I graduate but I will need a lot of support and encouragement along the way.
@robt, thank you for your advice.
In the country I live in, there's not much facilities for the invisibly "disabled".