Being a Patient Is Hard Work

Being a Patient Is Hard Work

It takes serious work to be a patient, regardless of the disease you have. The lay person’s portrayal of chronic illness and the subsequent clinical perceptions of patients leave a lot to be desired in their inadequate awareness, and, at times, acceptance of our reality. These impressions barely scratch the surface, yet many people assume that they understand the full picture.

Between juggling appointments, pharmacy runs, insurance battles, disability fights, medication dosings, medication side effects, physicians who don’t believe us or argue with us, our actual disease(s), emergencies, maintaining hygiene, and other tasks of daily life, including seeking support, understanding, and love from those around us, being ill is a full-time job.

Of all the rare diseases that I have, myasthenia gravis is my most demanding. Its demands are extra particular in that I must be far more astute about every medication, possible interactions, side effects, natural products, sun exposure, temperature extremes, stress, poorly-informed medical teams, insurance denials, and above all, hospitals and emergencies, more than anything else going on in the cauldron that is my health. Keeping on top of everything, as well as raising awareness, educating a constant rotation of medical teams that are often combatant with us, arguing about what we know we cannot take, or dismissing our oft-scoffed-at pain and mind-numbing fatigue, it’s a battle few see, but one many of us wage.

There is nothing that myasthenia gravis doesn’t impact.

Even our rest is work. I am extra stubborn, and despite knowing it’ll wipe me out, I often push myself in an attempt at some normalcy. Doing laundry, cooking a meal, running to the pharmacy, taking a shower and drying my hair, talking to a friend on the phone, or putting on a little makeup even when I am weary, are a call to be who I used to be. I’m pushing back against the shadow of myself. And I have to measure that cost against what the effort does to bless me by nurturing my dignity and helping to restore a picture of everyday life that I don’t enjoy often. 

Rest may sound wonderful to many, but it becomes monotonous and makes me restless, and believe it or not, it takes work to stay focused and allow my body what it needs. It is work to drag myself out of bed and take my copious supply of medications. It is work to find the energy to shower a few times a week if I’m lucky. It is work to stay engaged with others when all I want to do is give in and sleep. I see so many tasks that need to be done, and they call to me making me wrestle with myself, and my need for self-care and living as a functioning adult.

I also have to work hard at maintaining relationships, mostly online now, as I don’t have the energy to go out like I once did. Finding joy and keeping a more positive outlook and a hopeful horizon for my future, even when my day-to-day leaves a lot of question marks, frustration, disappointment, fear, and a vast array of other very normal, yet equally complex, human emotions is no easy feat, either. There are days when it is one of the hardest things I do.

It may be a struggle for others to understand the magnitude of work it takes to be sick. But those of us who are sick compassionately understand. Finding others who intimately understand, support the hidden struggles, and help us to find our joy and laughter along the way is a blessed oasis in the desert.

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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.

7 comments

  1. Ah Rebekah, a most refreshing article. I am sending it out to friends and family under a subtitle “This Will Help You Understand Me Better” As an MG patient I connected with just about everything you wrote. I am 11 months post diagnosis and of course like most others am still trying to “get a handle” on the HUGE adjustments for myself and others. I abhor self pity and would rather bite my tongue than whine. Like you I often push myself past good sense. I do it just to achieve some feeling of accomplishment thereby gaining some feeling of self worth. Sound familiar? I am blessed with a mobility cart to get around. Eleven months ago I was still riding my Harley Davidson. I am thinking of getting a plaque for the cart with “Hardley Davidson” on it. LOL As I wrote this sentence a neighbor just rumbled by on his Hog. :>) Please keep up the excellent articles. – Charlie O

    • Rebekah Dorr says:

      Hi Charlie! Thank you so much for your reply! It is really hard for us stubborn folks, isn’t it? 😉
      I have been living with MG for 7 years now and I am still working on adjusting. It is hard when we want so hard to go back to normal, and even harder when others don’t seem to get it. I pray it gets easier for you and thank you for the encouragement!

      • Jan Friend says:

        I also got my MG at 15 yrs old. Am now 68. Your artical was right on. Since 1964 no doctor bothered to test for my MG as they didn’t believe me after there was a test for it. I told the doctors and told them I had MG when my daughter was born in 1991 with MG. The docs just said she was fine but wasn’t hungry.. but I knew she was weak and couldn’t drink. I force feed her. Not until 2009 was I tested for MG as I also was testing for NMO and the results “happened “ to be positive for MG.
        I’ve always just think I am lazy as I can’t keep everything picked up as I’d rather sit and rest.
        Jan Friend

  2. Stephen Marchesini says:

    I am on my 3rd year with MG. I take my meds I do not rest at all. I have what seems to work for me is going to the gym 4 days a week if not more. I spend an hour to an hour and a half at the gym. Between my meds and my work out I have reversed my symptoms. My doctor has told me I will get weaker. I told him the hell i will. I have to many things to do places I want to see. 3 years ago I could not speak after a certain hour at night my left eye was almost shut. I have turned all that around. I give credit to the gym and I guess my meds. I am here if anybody has any questions in what I have done that has changed my life. God bless all stay stronge and positive.

  3. laura shanko says:

    Thank you for sharing. This made me so emotional because i can relate to the pushing yourself part. I literally got in an argument today with my husband about pushing myself to much and then I’ll be paying for it. I was trying to explain to him I want to feel like I use to before MG, so when I feel good I’ll do way to much. I just feel like what the heck am I contributing that I was able to get dressed, tend to dogs, do a load of laundry, and make dinner {which reading this is actually alot for me in a day} it makes me sad that those are my accomplishments now in life

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