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.
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.
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