Why I Am Not ‘Better’

Why I Am Not ‘Better’

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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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.

3 comments

  1. Milana says:

    When i got diagnosed i felt that i need to share my ‘sad story’ with everyone. Some show interest an some were just polite. Now i say ‘ I’m better. ‘ And i feel better when i say that. Thank you for all wonderful stories.

  2. Dick DeManss says:

    So sad to hear of your experiences. I can relate, because I have been living with MG for 5 years with intermittent successes and failures. I wish you well, friend.

    Dick DeManss

  3. Lois E Osborn says:

    My journey has been 2yrs of HELL. I knew something was wrong when I got the dbl vision but it took forever for me to get into a neurologist and by the time I came back for the result from my blood test I was in crisis and they took me straight to ICU and from there I bounced in and out of crisis 3 times. Months later and 6 months IVIG I finally started tapering the predisone. All was going pretty well until my husband who has a heart condition became very ill. He was bleeding from taking too many aspirin. I had to call 911 and sat 4 days in ICU while he got blood transfusions. They did surgery to plug up the bleeding. Then my eyes started jerking. I’ve had twitching on and off since this whole mess started but this was a more serious spasms. I am sick of the predisone and really I feel this is a journey that I am going through alone. People ask me how I am doing but I don’t really think they want to hear so now I just say “fine”

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