Understanding Our MG Challenges: What We Want You to Know

Understanding Our MG Challenges: What We Want You to Know

A rare disease diagnosis takes you on a different path than that of your friends and family. It means you have to count your spoons, plan your life, and work around your limitations. You may not get to study for your dream career, and your leave from work mostly will be used for sick days. Others will doubt you, you will sometimes doubt you, too, and you will have to work much harder than others to prove yourself.

We want our friends and family to understand our challenges. Following are the things that we’d like our loved ones to know:

We didn’t choose to be sick.

In fact, we hate it a lot more than you do. We don’t do this for attention or enjoy yet another hospital admission. We see the eye rolls when we talk about our condition and hear the muttered comments like, “Things aren’t that bad,” or “It could be worse.”

Hospitals are not fun places for us.

Our hospital admissions might have left us with medical post-traumatic stress disorder. We realize that hospital stays can mean that our condition has tightened its grip on us, and we may have to undergo more testing, needle pricks, and other procedures. It’s a scary experience.

We still have dreams and ambitions.

Before my diagnosis, I was super-active and participated in competitive dance and other sports. I planned to study to be a doctor. I wish that were still a possibility. It hurts my soul when I feel as if I let myself down by failing to achieve this goal. I don’t need judgment about my choice of employment or study. And if I am unable to work, it is not because I am lazy or taking advantage of my diagnosis. I wish that I could work a full-time job and help to provide for my family.

We are not lazy.

Every day we work a lot harder than “regular” people just to make it through. Getting up from our chair at the office takes a lot more energy than it takes you, and even driving ourselves to shops requires concentration and planning. We may need to nap more than the average Joe, but extra rest helps to refuel our bodies and allows us to push through the remainder of the day.

We hate missing out.

Last-minute cancellations, napping in the corner, and leaving events early are common scenarios. We know it feels as if we are pushing you away or don’t want to spend time with you. We love being around you, but sometimes our bodies don’t let us get involved. Please continue to invite us.

Teach your children that it’s OK to be different.

We have witnessed parents directing their children away from our wheelchairs, medical masks, or bald heads. Instead of avoiding us, explain to your child that people have differences and allow them to come talk to us. If we don’t start opening the lines of communication, the divide between “normal” and “rare” will continue to widen to the detriment of all of us.

We love you.

We see your tears and feel your support and hope. You knew our life plans. We know that you want the best for us and we appreciate your good wishes. We realize that our condition causes you stress, too, and we know that you wish you could take it away from us. We love you and wish that we could show you just how much you mean to us. We could not cope without your support.

We may be rare, but we still need a ‘normal’ life.

We need love, support, friends, and family. We need to laugh until our bellies hurt, to hear about your life, and to share in your joys and sorrows. We need to know that we matter and are making a difference. We need to be included.

Thank you for wanting to love and support each of us, for wanting us to live our best possible life, and for being YOU!

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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.

I am a Myasthenia Gravis Warrior, wife, friend, and fur-mum. I love to read, crochet, sleep & find the good in every day. I always try to find the silver lining!
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I am a Myasthenia Gravis Warrior, wife, friend, and fur-mum. I love to read, crochet, sleep & find the good in every day. I always try to find the silver lining!

6 comments

  1. Stephanie Kallides says:

    Thank you so much for this prescious article that really depicts how one feels while trying to cope with this disease. Im new to all this. I was diagnosed in May 2019 and am still learning. So i appreciate everything that i can read with regard to this illness. I hope and pray that one day a cure will be found.
    Thank you once again. I follow this blog and enjoy the information.
    God bless you
    Stephanie Kallides

    • Megan Hunter says:

      Hi Stephanie! Thank you so much for following my blog, & I am so glad to hear that this information has been useful to you. Please take care of yourself & know that you are not alone in this journey.

  2. Louise Carter says:

    Thank you for your beautifully worded article. My 15 year old daughter was diagnosed in the last month – suspected since November. Large Thymolipoma found incidentally whilst looking for an autoimmune disease . I’m really struggling with the slowness of the system – surgery booked for early March – yet the size has increased by 2cms in 6 weeks . Any words of advice great fully received to help her with the diagnosis and treatment process . So thank you once again for your article- I’m sure it will help reinforce that she is normal and did not choose to have this condition or feel the way she does .

  3. Baba Lee says:

    I AM in my 70’s…have been dealing w/ MY since 2013 Sept., one year prior,is when I notice symtoms…ie weak muscles, double vision. Debilitating to say anything. No one in the professional arena could help. I felt scared and alone. Finally I met a young Dr. Of neurology who found it through bloodwork!? Now I had something to work with…but too much time had passed, and I suffered a full-blown calaspe. Was admitted to the emergency dept. So, my new life has begun. Keep us informed

  4. Kenneth Shelly says:

    I just read your messages and some of the comments. I found out that I have MG 4 years ago next month. Went to different doctors around here and could not get things going right. I finally got accepted at Mayo Clinic . Me my wife and brother went to Rochester Minnesota in July of 2016 and spent nine days for testing. I met a doctor that is one of the leading in this disease field. At Mayo they did all the testing right there and did not have to wait months for tests and results or referring to another test. I would suggest that Louise call Mayo and try to get her daughter in there for service that she can not imagine.

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