When I see someone for the first time in a while, they sometimes ask me if I am better. I have to pause before answering. Being chronically ill means that this is a long-term condition and that I may never be “better.” A chronic condition is a disorder or disease that is persistent or long-lasting in its effects. The term chronic is often applied when the course of the disease lasts for more than three months. Chronic disease is not a headache that an over-the-counter painkiller or nap will relieve.
Myasthenia gravis appeared when I was 15. It was a battle to smile, talk, and swallow. I eventually couldn’t get out of bed on my own or even wash my hair without assistance from my mum. I have been sick for half of my life, and I honestly can’t remember what it is like to be “normal.” The constant mental and physical exhaustion that accompanies chronic illness is not something that doctors warned me about. They didn’t tell me that I would feel left behind as friends moved on in their lives to study, get a full-time job, have families, and keep busy with social events.
I recently saw an old friend for the first time in years. She immediately exclaimed, “You are looking so good! Are you better now?” While I know this was meant as a compliment, my heart sank. Do people think I am acting or exaggerating what I go through? Will I ever know what being “better” feels like? Do I even know what “normal” is anymore?
My go-to answer is that I do feel much better. Do friends have the time to hear what is really happening? Do I want to stress others with the truth of my life? Is it a question that they feel they have to ask? Are they completely bored by my constant hospitalizations? (I don’t blame them if they are. I know that I am!)
I do feel better than my very worst days, but I also don’t feel nearly as good as I did when I was healthy. I have pipes in my chest and a port-a-cath under my collarbone. Currently, I take medication six times per day. There are times it’s difficult to breathe while lying down due to my diaphragm and lungs not working properly. My husband has had to dry and brush my hair for me at times, but there are other times that I can tear up the dance floor at another wedding. I never truly know what is going to come about.
So, yes, I am “better.” I am emotionally stronger. I have created a hashtag for my social media posts: #weakmusclesstrongheart. I will never give up, even if my body does.
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