When you finally receive your diagnosis of myasthenia gravis, it will probably come as a huge relief. You have likely been sent from doctor to doctor as they try to discover what is going on with your body. You’ve had countless blood tests and scans, and retold your story many times.
You may have been accused of making up your symptoms for attention, or told that your issues are psychosomatic. You have been trying to push through the anxiety and weakness for some time. And you are probably very scared. I want to tell you that this is OK.
The National Organization for Rare Disorders has a detailed description of myasthenia gravis on its website. But even reading it 16 years after my diagnosis confuses me. Following my diagnosis, I received a simple explanation that is easy to understand and remember: “The message between your nerves and your muscles gets blocked.” That means that while you know that you need to swallow, speak, walk, etc., the message can’t make its way to stimulate the nerves to get the action done.
MG is an autoimmune condition. Think of your immune system as little soldiers who have been trained to fight any infection. They get taken over by a zombie apocalypse and now fight everything in their path — including the good guys.
Following are my tips for living with myasthenia gravis that I hope will help you:
1. Keep extra medication everywhere.
Keep it in your school bag, with the school nurse, in your work desk, car, and purse, and with your significant other. I guarantee that someday you will forget to pack your medicine — probably Mestinon (pyridostigmine). Ensure that you have a backup plan if this happens.
2. Do your own research.
When you have a rare condition, few doctors know about it or how to treat you. I found this resource at the Myasthenia Gravis Foundation of America website. I printed out the information leaflets and carry them in a folder everywhere I go. I have a copy in my car and another at the office, and I bring one to my doctor’s appointments and hospital admissions. These handouts have literally saved my life as they include information on which medications are contraindicated. I also have a seatbelt cover with my name, diagnosis, and medical aid details written on it. I carry an information card in my purse to hand to people if I am struggling (like in the “Joker” movie).
3. Plan your activities.
If you expect to have a busy Saturday, go to bed early during the week to save your energy. Sleep when you need to and ask for help. Don’t try to do everything yourself or you will end up going backward. And speaking from experience, that is not a good thing.
4. Join a support group.
Find people who understand what you are going through. They will become some of your closest allies, encouraging you, crying with you, celebrating your victories, and being there when you need to chat about your latest diagnosis, treatment plan, or life in general.
5. Feel your emotions.
For so long, I believed that I needed to act as if I were OK. I put on a happy face, but inside I was crumbling. I continually questioned why this had happened to me. Even now, I feel guilty about complaining about being sick. But I realize that the effort it takes to pretend is not worth it. And crying is OK.
6. Know that we are all different.
Some myasthenics battle only double vision while others are ventilated every time they get a cold. It’s not a competition — know that what others are going through might never be you. The disease’s wide range of symptoms makes us more difficult to treat. Don’t compare yourself to anyone else. Each of us is a snowflake and unique in our own way.
Take care of yourself. We are here to help and support you. You’ve got this!
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.