The Anxiety That Comes with an MG Diagnosis
Last updated: September 2023
Anxiety on its own can be debilitating. It’s a completely separate and individual diagnosis that many people struggle with. What I didn’t expect when I was initially diagnosed with myasthenia gravis (MG) was that I would be diagnosed with other ailments, including mental health issues like anxiety, years later.
The loneliness of myasthenia gravis
Granted, anxiety following the diagnosis of a rare and unpredictable illness will take it’s toll on you, and for many reasons. Especially with myasthenia gravis where each person who has it is different. We all have different ways our symptoms present, different medications and/or a combination of treatments and medications that work (or may not work for some of us as well). Then there are those who have some of the symptoms but not the other ones.
When you have a disease that is so complex it’s even hard to relate to someone with the exact same disease, it can be very lonely and isolating. That loneliness and isolation causes a lot of anxiety because you feel like no one really understands 100 percent of what you’re going through.
That includes medical professionals also. Although they learn about MG in school, some don’t remember learning about it because it's rare. Many specialists who do remember it haven’t actually experienced it firsthand. They go off of their experience or by the textbook definitions. Reading the above, you know we aren’t "textbook," so it’s important to find a doctor who has the experience and is willing to listen to understand as well. Otherwise, that puts us in uncomfortable situations, which of course causes anxiety. Our health and healing is literally in their hands sometimes.
Worried about reactions to medications
Another thing that contributes or makes the anxiety that comes with MG worse, is not knowing how we will respond to medications. Especially in the beginning of my diagnosis, I found myself reading the labels and googling the ingredients on everything, wondering if I’d have a reaction. Since there are so many medications that can cause issues for us, it’s challenging, if even possible, to find things to make us feel better when we are sick, have allergies, or when we are preparing for a surgery.
Even medications prescribed for MG have to be introduced and monitored closely. Prednisone is a medication commonly used with MG, but at the wrong doses, too quick of a taper, or an adjustment, it can cause us to flare also. In addition, Mestinon given in too high of doses can lead to a cholinergic crisis. Can you imagine taking a medication that’s supposed to help but it ends up doing the opposite? Fear city! Lastly, there are even some medications that are prescribed for mental health which make MG worse; definitely an oxymoron.1-3
We are always thinking about whether symptoms will pop up
On top of all that, the idea of not knowing when symptoms can pop up (or how long they’ll stay) can cause an extreme amount of anxiety. It can interfere with our plans even when we are doing well. It affects our day to day life and we often have to make adjustments that healthy people (mentally and physically healthy) don’t even have to consider. It’s constantly something in the back of our minds that we wish we didn’t have to think of, but we do.
They say that people diagnosed with autoimmune conditions end up with more than one - whether it be mental or physical ailments. We just have to do our best to control what we can and not worry about the other stuff although it’s easier said than done!
My most frustrating MG symptom is _____.