Not Recognizing the Person I See in the Mirror With MG
Last updated: April 2023
Have you looked in a mirror and not recognized the person you saw? As we watch our physical appearance change, it can damper our mental health. Appearance can affect our motivation in all aspects of life and trigger unhealthy coping habits and destructive thinking patterns.
Myasthenia gravis (MG) can throw a lot of physical changes and different appearances our way at once, and oh dear, is it overwhelming. I want to tell you about my daily battles and how MG keeps altering my body. Remember, you are not alone! And guess what? Change is good, keeps us on our toes, and always opens opportunities for rediscovering ourselves.
Scar and wires
My transsternal thymectomy scar doesn't bother me much. Before surgery, the fear that it would hinder my self-esteem was daunting. Before the scab went away, my scar was pretty gnarly. I got used to it because I often kept it visible in public. I felt it avoided some of the rude remarks and comments I had received when wearing a mask.
I still grieve, knowing it is out of my control and that I will never be able to see myself scarless again.
The feeling and thought of the wires are a bit tougher to get used to. I had pain all over my upper body for the first few months of recovery. The slightest movement often caused spasms in the area around the wires. I felt like I could feel them moving even though I was assured everything was in place and healing correctly at follow-up appointments.
I grew more uncomfortable with the wires after seeing an x-ray of them. It looks like a child twisted some wire together. There is no symmetry, and I know it is normal, but it just looks alien and machine-like for that to be inside me. I no longer experience pain around my surgery area except for soreness sometimes. However, I still get queasy, thinking about my chest being sewed together with wires.
Fluctuating weight gain and loss
I quickly went from the heaviest I had ever been to underweight in a month. Prednisone caused me to gain weight from fluid retention. The instant I weaned to 10mg, I had practically no appetite and experienced pain when eating.
I don't look like the same person in the face. I had a "moon face" after a few months on Prednisone, a common side effect of a fuller, rounder face. Now with less of an appetite, my face is skinny with sunken eyes.
I have had to alter my approach to exercise, and because of my weakness, I am not as motivated as I used to be. Little muscle definition is frustrating because I compare my body to before MG when I could lift weights progressively and consistently.
Double vision was only an everyday problem for a month before I was diagnosed and started treatment. But even when diplopia stopped, I continued experiencing photophobia, which is sensitivity to light. Bright lights weaken my eye muscles, making it sometimes impossible to keep them open. Light, specifically white, becomes super bright, glaring, and blinding and can lead to double vision. I notice it most on sunny days or when my device screen is too bright.
Sadly, I have never been a regular sunglasses user, so getting into the habit of keeping them at hand has been challenging. I resultantly squint all the time and am left with 2 prominent deep lines between my eyebrows! Turning the brightness down on my laptop and phone screen and wearing blue light-blocking glasses helps keep my vision steady and puts less strain on my eyes.
Insomnia from medication and cramps from weakening my legs all day lead to a very unenergetic facial expression and large bags under my eyes. I always worry it makes me less approachable and that it's hard for people to tell if I am happy.
CellCept has led to substantial hair loss. My hair has been the most noticeable and hardest-to-accept change I have undergone. A lack of nutrients from not having the appetite to eat enough could also be a considerable factor contributing to the loss. My hair used to bring me a lot of confidence. I most certainly miss it.
Everyone's physical appearance changes
Natural aging happens to everyone and is a beautiful reminder of the preciousness of time. Wrinkles are unavoidable without paying time and time again for procedures to hide them. Weight gain and loss will be a part of almost everyone's story at the end of their life. And we all accumulate scars and evidence of what we've endured. Our bodies carry our story!
How often do you experience MG exacerbations/flares?