To those recently diagnosed with MG, you’re in the right place
Online resources can answer questions of yours and those close to you
If you’ve been recently diagnosed with myasthenia gravis (MG) and you’re looking for a website to help you understand what that means, including how to explain to family members what your life is actually like, you’re in the right place.
If you’ve been hearing the same sh*t about being lazy, that you need to exercise or try yoga or some magical herbal cure, and you’re looking for a way to show people telling you these probably well-meaning statements that they’re incredibly inaccurate, you’re in the right place.
If you’re just trying to understand what your diagnosis means for you and all that comes with it, you’re in the right place.
Understanding MG
Hey! If you’re new here, my name is Shawna, and I’m a business owner, disabled veteran, wife, and mom with myasthenia gravis. I’ve been living with MG since 2012. One of the hardest things I’ve had to accept has been the idea that not everyone in my life can or will understand it, even if I want them to.
They may not understand for many reasons: I’m not doing a good enough job explaining what my life is like (highly unlikely), they don’t want to understand my life, or they don’t have the capacity to understand it. Whatever the case, my goal today is to help you find the words to explain what life is like when living in a body ravaged by this disease.
One of the first things I suggest you do is really understand the disease yourself. Myasthenia Gravis News has some great articles by patients like myself, as well as by science journalists (usually with doctorates) who do a great job of breaking down the elements of MG. Whether you have ocular MG, generalized MG, or congenital MG, it doesn’t matter. There’s bound to be some great information on this site.
Take some time to read not only the current columns by Mark Harrington and me, but also the archived ones. As you may be learning, MG is referred to as a “snowflake disease” for a reason: We patients all present differently. The archived columns were written from varied perspectives. My way of relaying information may not jive with you, and that’s just hunky-dory. But don’t let that stop you from finding someone who has a writing style that meets you where you’re at.
Once you understand the disease, it becomes easier to explain it to friends and family. One thing I’ve learned over the years is that speaking in an accusatory manner — whether to friends and family or members of a care team — never works. When trying to explain how their actions or words might be making you feel, try something like the following:
“When you call me lazy, I feel like I’ve failed to explain how myasthenia gravis is affecting my activity level for the day. Do you have some time so I can try to explain it?”
If the people in your life seem interested in learning more, encourage them to visit sites like this one or the Myasthenia Gravis Foundation of America, which has seemingly countless articles and resources. Most of them are aimed at the patient or provider, but a growing number of resources are directed at family members and caregivers. Don’t stop looking just because you’re not able to find something quickly.
I know that having a supportive family or a network of close friends may not be everyone’s experience. If that’s you, find a support network in this MG community. Check the comments in the columns here or support groups on social media sites; you don’t have to do it alone.
I encourage you to follow all the links within this column. They go to resources that can help you understand this disease, as well as articles that provide tips and tricks to help your family understand.
Note: 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. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
Comments
Maria
I'm glad to find you to understand better what I am going through. Thank you.
Paul
What to look for in buying shoes, keeping your balance is top choice.
Talk with a war amputee with two artific
Candace Graham
I am recently diagnosed with MG. I have asymmetrical face and no sign of stroke in CT or MRI scans. I also have brain fog. My neurologist says these are not symptoms of MG. Does anyone else have those conditions along with double, blurry vision?
Chris St John
The V A declined my claim ,because It didn't develop within a year of leaving the service ,,other disease from agent orange have found to appear decades later..Other than a bad hernia surgery all my aliments are Agent orange related have pictures of company area being sprayed SPREAD SHEET SHOWING EVERY FLIGHT flown spraying A O, they sprayed 80,000 gals in Pleiku in a 10-month period that I was there.... was wondering if you had any info that would help my claim other issues High blood pressure, type 2 diabetes very brittle finger nails, sores on my hands that come an go Orlando VA calls it eczema (no testing was told they call everything eczema when they don't know what it is Thank you Chris St John
Shawna Barnes
Hi Chris. I'm sorry to read that you're struggling with your VA. I also have skin lesions on my arms and legs that have been diagnosed as eczema, but it's not really eczema. My myasthenia gravis is not rated as service connected but it should be. I have other disabilities that have my rating at 100% T&P, so I chose not to fight the battle of having to go through comp and pen again. As far as recommendations, I would look back at any medical issues you may have had that were may have been the first signs of MG and work with your neurologist or PCP to put notes in your records that your first symptoms for MG were as of those dates. My first symptoms began within a year of discharge, but it took 7 years to get the diagnosis. I would also look at the PACT act if you haven't already. If you need to, find a VSO that can help you with the paperwork that knows your VA. The DAV is a great resource for this type of help from what I've been told. They help you find the paperwork and file all the necessary amendments.
Also, there are quite a few veterans that speak up in the MG forums. If you haven't joined us over there, I'd like to invite you to. Someone may have additional information that would be helpful.