If you have a diagnosis of Myasthenia Gravis like me, here are a few things you probably already know:
1. They call us Snowflakes because none of our symptoms are exactly alike
2. There aren’t a lot of medication options to take for the disease
3. How hard it is to get those medications approved by insurance companies
4. How incredibly frustrating/lonely it is to have an illness that nobody has heard of
5. No one really understands or knows how to react to our funky rotating symptoms
But what do you do after you’ve got the M.G. basic knowledge down? Where do you go for support?
Who do you turn to for help when you have a question? Where do you go for guidance when there’s a problem or are in need to find a specialist? How do you find your new normal in this life that you didn’t sign up for and know nothing about?
When dealing with an ‘orphan” disease that doesn’t have a network of support like some other illnesses, one can try to go at it alone, but that typically doesn’t serve us well. Invisible illnesses can be difficult because we can be totally fine one minute, and then a pile of mush on the floor the next (or is that just me?). If the embarrassment we may feel because of our physical instability is unsupported, it can easily turn into shame and eventually self-alienation.
Unfortunately, there is no massive Myasthenia walk, run, or cycle. We don’t get a month of showing our MG pride by growing mustaches; and I haven’t seen a celebrity put on a fundraiser for us yet (but if you have, let me know).
It is pretty much up to us to gather ourselves together and form our own snowflake tribe. Finding others with the same issue is invaluable because being in community helps us understand ourselves and the issues at hand. It also provides guidance and empathy on a deeper level because we are all going through much of the same thing.
Here are a few recommendations to begin finding the Myasthenia Gravis support you need:
1. Start with the Myasthenia Gravis Foundation Association (MGFA). They cover many questions you may have and the site has links to some support groups. Also, register in the Patient Registry on the site. It’s a great way to get updates on new information and upcoming trials.
2. If there is an MG 1K and 5K Walk in your area sign up and go! You don’t even have to walk, but it is a great way to meet people with MG and their families. You will be surprised how fast you connect to those in the same situation as you. It’s really a great feeling to belong to your tribe, and the race is a fundraiser for MG research. A win/win.
3. See if there is a live MG support group in your area. Chances are there isn’t but if that is something your are looking for, you can start one. All you have to do is contact the MGFA and they will help you find one or start one up.
4. Look around for non-Myasthenia support as well. There are other groups for autoimmune disease, chronic and invisible illness, autoimmune nutrition, and many other options that are equally important. Just because they are MG specific doesn’t meant they won’t benefit you, some may even more because of their content. Are you looking for overall Wellness? Nutrition help that is autoimmune specific? Mind/Body/Spirit connection? Practicality dealing with life and autoimmune disease together? Shop around for MG specific and non-specific groups to get the balance you need.
5. Online support sites develop their own personality. Find a few you are comfortable with and try a few out. If they aren’t a good fit, move on to the next. But make sure you participate in the ones you decide to call home. We get out what we put in to anything. Especially when it comes to supporting each other.
6. Keep it light. We all have down days when life seems pretty dark but make sure the groups you are in don’t make that their theme. Look for groups with an upbeat tone. And be the encourager you want to have. Ask questions, make someone smile, share an article, new information, or insurance help you found productive. Just don’t be the constant Debbie Downer of the group. We all have those moments, we just don’t want to live there.