A Letter to the Newly Diagnosed Myasthenic
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No one will ever fully understand what you go through, but I am pretty sure you have figured that out already. People are going to surprise you in the best and worst of ways, but you will grow from it.
Unfortunately, you have been dealt a poor hand of health — you have to deal with it now. There is no shame in mourning; it is a big loss, but bigger things await you. Bigger things are changing inside of you. You are going to be fine, I promise.
You cannot protect your loved ones from what is happening; do not waste your energy on trying to save them some inconvenience. If they love you, helping you will not turn you into as big of a burden as you feel you have become. You should swallow your pride and allow them to help you, at least now and then. Asking for or accepting help does not make you weak, it makes you human. You are still very much human underneath all of the medical stuff you have going on. You are allowed to be human.
There are very few things self-centered people will ever understand about other people. It is not your responsibility to teach people how to be decent. Yes, your existence has placed them in a situation unknown to most, but that is not your fault. You should guide them in situations that are very overwhelming, of course, but good manners are not something you are forced to teach anyone just because you are sick now. Everyone should take responsibility for themselves; that is what being a grown-up is all about. You are a person before you are sick. It’s important to remind yourself of that.
Do not mess around with your medication. You have to take responsibility for your health now. There are certain things your body is messing up with, and it has become your responsibility to fulfill those functions by taking your medication. Do not take this responsibility lightly, because you do not want to learn the hard way why your medication is so important. Take responsibility for yourself, even if you feel you are too young for these things. This is your life now, so accept the responsibility, and you might flourish. There are worse things than gaining weight due to a medication, such as not breathing. Your life is important not only to you but also to others.
You are allowed to feel angry, sad, annoyed, and hopeless. You do not have to be ashamed of feeling these things. If you speak to any other chronically ill person, you will soon learn that what you feel is perfectly normal. You are not going crazy. You are not losing who you are. Your life is changing, and if you do not adapt, you will always feel lost or stuck between two worlds. Start by taking baby steps. There is no rush. But you will feel much better as soon as you start the process. No one likes being a novice at anything, especially at their own life.
You are not weak just because your muscles are. Your life has taken a different turn than most. But the beauty that you will experience from the amazing people who will enter your life is unimaginable. You will get to see exactly what it feels like to have your faith in humanity restored, thanks to your loved ones. I have had tears in my eyes from messages people have sent me from all around the world. Distance means nothing when someone is really interested in your well-being. That goes both ways, so remember not to get too lost in the maze of your health and completely neglect your friends. Do not forget to thank these people. You will soon learn that they are few and far between, so realize their worth as soon as possible.
Most importantly, you will be fine. Remember, life is beautiful. Never stop fighting.
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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
About the Author
cortie potter
Iam a M/G patient, have been for 10 years now, I am 89 years old. The last 10 years of my life has been a roller coaster life, In and out of the Hospitals. Lots of treatments and Medicines. I was a healthy person, before M/G took me over, Now I am having trouble getting around. Walker , Wheelchair. No energy... And my age is against me. But I try to look on the Happy side of life. God Has Blessed me with a good family.
Rex Kibby
Exactly.
Les Heggen
This letter is amazing, so many truths & facts, I as an MG sufferer have gone through most if not all that this young lady has written & said is so close to the bone it's not funny, so thankyou Retha for taking time to help & explain what her body will go through, well said & written. Les Heggen, Sydney Australia
Clinton Driedger
What a ride it has been I was diagnosed last year I was in full crisis respiratory failure pressure down to 18 heart stopped 4 times 15 days in ICU I was lucky when I got out of hospital I was on ivig not much luck with that now on TPE twice a week doing very well I have a great neurologist great nursing staff at the hospital I go to I am a lucky guy
Karen Hammons
Diagnosed July 2023, on Melatonin, First infusions this WK,
I am 78, life has slowed down for me since , so far I am able to do things myself, , but need some help , husband passed in December 2023, so living alone , hopefully infusion will help, time will tell and faith in God ♥️
Donna Kobylakiewicz
I am 77 and just diagnosed in dec. 2024. For at least 4 years I went from specialist to specialist and unfortunately each found something but it was not til my sight was effected in Nov. of 2023, after 3 visits to the ophthalmologist, did I get the right blood test that confirmed the MG. of coarse I didn’t like the diagnosis, but at least now u feel that I’m not crazy and can learn how to cope.
I question if this a rare diseases or just very under diagnosed. The symptoms seem so trivial at first.
I’m also a widow and ,I live alone but have a great family and community support. Going from a very active person, the one who organizes the trips and get together to going for blood test, and infusions is stressful and a life changer for me. Trying to educate myself as much as I can, accepting my limitations and trying to accept HELP from loved ones is my new goal.
Patricia Keyes
I am 88 and was diagnosed in November of '23. I am uplifted by the letter introducing me to this site from sunny South Africa which I visited in the '80's. I moved from sunny California to hot southern Arizona and am very concerned as to how I will be able to manage in the heat in this upcoming summer.
Melody Busch
Thank you very much for this lovely heartfelt letter. I’m saving this in my favorites as from time to time I may need this pick me up. Very much appreciated! Keep up your great work as we, the MG community, needs you!
Sheila Nelson
I was diagnosed with MG in 2009. I have been in remission and very thankful for that. I have been through Covid and survived. This year I had Shingles, was in the hospital. My immune system had been depleted due to the medication I was taking, but now I have the care and great doctors and I am stable and doing better. I move a little slower, but I don’t let MG get the best of me. I take one day at a time and make the best of it. I also rest during the day when necessary. I thank God for getting me through each day.
Lisa Overturf
Retha - your words are hopeful, kind, loving, and most importantly real. Diagnosed only 5 months ago, I have struggled to describe both the disease and my overwhelming emotions to those in my circle. Truth is, we are all struggling to make sense of it.
Thank you so very much and I would love to see a picture of your dog!