First, I’m sorry. I won’t shy away from telling you that myasthenia gravis (MG) is lifelong; there’s no cure (yet), and the next best thing is good management. I’m sorry because I know how difficult it is to accept that you may not be able to do the things you once could in the past and that you may no longer be able to do some of the things you would have done in the future. I’m sorry because I know how draining it is to remember the days you could get up and go without medication or worrying about when you’ll run out of energy.
But if I could recommend one thing, it would be to be open about your diagnosis. For almost 3 years, I did the polar opposite of this. I kept my diagnosis between immediate family only because I wasn’t prepared to have to explain what MG was to everyone that asked. I was also in secondary school at the time and, being on high doses of steroids which caused moon face, acne, and weight gain, I had some unthoughtful comments directed my way. Being open about your diagnosis may not prevent these things, but it may help some people be more understanding toward you and less judgmental.
I remember the day I was diagnosed like it was yesterday. Funny enough, that day seemed the easiest of them all and, in hindsight, it’s because things hadn’t sunken in yet. I hadn’t realized what MG was and what its impact truly was. But as I started on medication, went on high doses of medication including steroids, and had to change my daily routine, I slowly watched the Zainab I once knew fade away. That’s when I knew my life had changed.
It’s natural to feel lost and unsure about what to do or whom to look to for help, but there are many organizations out there that help people with myasthenia and, importantly, their families too. These charities offer support groups where you can meet people who, like you, have just been diagnosed with myasthenia, or you may even be lucky enough to meet some people who are further along in their MG journey who may be able to reassure you.
I would emphasize, though, to remember that everyone is unique – what worked for others may not work for you, so it’s important to always keep this in mind when talking to others about their diagnosis journey. Meeting others with myasthenia is vital in creating that sense of community, which can too often be lost in rare disease groups.
Finally, my last point would be to not let MG take over your life. MG undoubtedly changes your life, but don’t let it stop it. Try and keep up the hobbies you love and the things you enjoy, even if that means modifying them to match your MG status that day. You can still achieve all your goals and more, but you might just need to pursue different avenues to get there. You may be in a dark patch right now and it seems like it’s never going to get better. Trust me, I’ve been there too many times to count. But just know that there’s a light at the end of the tunnel.
It’s a tough ride, but I believe that you can survive it.
Photo Credit: Ezaka RAKOTONDRAMANANA / iStock / Getty Images Plus
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