Not All MG Support Groups Are Helpful

I want to say how thankful I am for Myasthenia-Gravis.com and the way this community is run. I will admit that at times I have some controversial viewpoints. Sometimes I say things that others won't say, even if they may be thinking it. But I don't say these things out of meanness or malice, and I always respect the view of others.

Hopefully we can keep communication open, even if our view viewpoints are not the same. It's okay to have different viewpoints because we're all different, just like myasthenia gravis (MG) and its symptoms. We all have valuable information to share that others may not be aware of. Through open communication, we can share information that may help others.

My experience with other support groups

Now, I'm not trying to bash other support groups. I know there are many wonderful people in those groups that truly care and understand MG. They know there are many different people with MG who experience many different symptoms, and that we all have different opinions and experiences. But you know ... I've been finding that just a few bad apples can spoil the whole bunch.

In other support groups, many of the admins also have MG. In my opinion, that's not a bad thing on its own. But it can impact the admins ability to see things fairly. MG is called a "snowflake disease" for a reason - no 2 of us are alike!

Medical gaslighting

Also, I've noticed if an admin happens to have any medical training, thoughts from others who do not have medical training are dismissed immediately if they don't align with the way that admin perceives MG or treatments. Usually it includes degrading, negative public comments and there is no room for open discussion.

It feels exactly like going to a doctor and being belittled and gaslit, except this is from others who have MG. Those who fought the same battles with MG, the same symptoms, and possibly the same journey of trying to get a diagnosis and treatment! Unfortunately, I have seen this kind of behavior in more than one online support group for MG. It's saddening to me to see that there is no empathy!

You are important

So, if you have been hurt by one of these groups, I am so sorry! Please know that your thoughts, feelings, and experiences are all very important, even if they don't follow the "textbook" MG experience.

What does this do to us?

What does this do to us as a group when we cut each other down? Well, the obvious is the division! As a group of people with MG and MG caregivers, we cannot stand united to help doctors figure out all of the symptoms that could possibly be related to MG.

This could even lead to delays in getting diagnosed, with the possibility of the uncommon symptoms of MG going unrecognized with no treatments (E.g. I've found some doctors and neurologists still think seronegative is a myth).

Destructive versus constructive criticism

While we all live in different areas, being able to freely discuss the cost of treatment or where to purchase the needed equipment can be helpful. But I've seen admins who feel their experience is the only one that matters. So, end of discussion on those sites, because it's all about them, and only them.

Not being able to talk about the cost of MG can lead people to spend more money than needed for their medical needs. There may be a lack of information, or they may not know what to ask their health care providers. I encourage you to keep this in mind when responding to MG community members!