A rare disease diagnosis takes you on a different path than that of your friends and family. It means you have to count your spoons, plan your life, and work around your limitations. You may not get to study for your dream career, and your leave from work mostly will be used for sick days. Others will doubt you, you will sometimes doubt you, too, and you will have to work much harder than others to prove yourself.
We want our friends and family to understand our challenges. Following are the things that we’d like our loved ones to know:
We didn’t choose to be sick.
In fact, we hate it a lot more than you do. We don’t do this for attention or enjoy yet another hospital admission. We see the eye rolls when we talk about our condition and hear the muttered comments like, “Things aren’t that bad,” or “It could be worse.”
Hospitals are not fun places for us.
Our hospital admissions might have left us with medical post-traumatic stress disorder. We realize that hospital stays can mean that our condition has tightened its grip on us, and we may have to undergo more testing, needle pricks, and other procedures. It’s a scary experience.
We still have dreams and ambitions.
Before my diagnosis, I was super-active and participated in competitive dance and other sports. I planned to study to be a doctor. I wish that were still a possibility. It hurts my soul when I feel as if I let myself down by failing to achieve this goal. I don’t need judgment about my choice of employment or study. And if I am unable to work, it is not because I am lazy or taking advantage of my diagnosis. I wish that I could work a full-time job and help to provide for my family.
We are not lazy.
Every day we work a lot harder than “regular” people just to make it through. Getting up from our chair at the office takes a lot more energy than it takes you, and even driving ourselves to shops requires concentration and planning. We may need to nap more than the average Joe, but extra rest helps to refuel our bodies and allows us to push through the remainder of the day.
We hate missing out.
Last-minute cancellations, napping in the corner, and leaving events early are common scenarios. We know it feels as if we are pushing you away or don’t want to spend time with you. We love being around you, but sometimes our bodies don’t let us get involved. Please continue to invite us.
Teach your children that it’s OK to be different.
We have witnessed parents directing their children away from our wheelchairs, medical masks, or bald heads. Instead of avoiding us, explain to your child that people have differences and allow them to come talk to us. If we don’t start opening the lines of communication, the divide between “normal” and “rare” will continue to widen to the detriment of all of us.
We love you.
We see your tears and feel your support and hope. You knew our life plans. We know that you want the best for us and we appreciate your good wishes. We realize that our condition causes you stress, too, and we know that you wish you could take it away from us. We love you and wish that we could show you just how much you mean to us. We could not cope without your support.
We may be rare, but we still need a ‘normal’ life.
We need love, support, friends, and family. We need to laugh until our bellies hurt, to hear about your life, and to share in your joys and sorrows. We need to know that we matter and are making a difference. We need to be included.
Thank you for wanting to love and support each of us, for wanting us to live our best possible life, and for being YOU!
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.