The diagnostic process and the journey to correct a disease by effective treatment can seem linear on paper. The reality rarely matches up. In that reality, many with myasthenia gravis become aquatinted with emotional and mental fatigue, the uncertainty of where to place trust, and the weariness of the long wait before that godsend of a physician finally comes into our lives.
I was wholly unprepared for the path to diagnosis and skilled care, and unaware of the cost of clinical ignorance, no matter how innocuously intended. Over the years, I’ve been charted and cataloged while waiting in strange rooms and beds, praying for the person I had waited so long to see, to finally have wisdom and quiet grace.
I’ve accepted that waiting and wondering and worrying are part of the experience, one we rarely talk about. We talk about the best experiences and even the worst, but what happens in between those major markers in our MG lives? How do we respond when let down once again, when we thought that surely this physician would be the right one to help us?
There is so much more to our journey than getting the right referral or sharing in each other’s moments of disappointment and grief over another miss in the rotation of “will they or won’t they be the one to help me.” We seldom acknowledge what goes into the arduous search, the painfully slow waiting, and the tentative embers of hope we stoke, fanning the flame just enough so that it is never fully snuffed out like a flame against a relentless wind.
For many, the emotional and financial quest for long-awaited help is wrought with obstacles. The days and weeks slip by as we anticipate that day to come. The sheer effort it takes to show up clean and dressed is tantamount to climbing Mount Everest. Harder is the collision of the tenacious balance between nurtured hope and earned caution.
We place the burdened necessity of intervention and survival on a gilded scale against emotional fragility and financial resources.
Sometimes we win and that appointment is the awaited answer. Other times it’s a blow to our fragile expectation of help and our desperation to be seen.
What do we do when we seek and fall back down? When the one meant to intervene in our most critical moments cannot begin to comprehend what it took for us to wait, hope, and show up? It’s a question I have no clear answer to; one I actively seek that resonates with so many others.
We are taught to “just go to the doctor” or to “just get another opinion.” It’s as though we’re shopping for the right loaf of bread in the grocery store, as though it costs us nothing to try and try again. Yet we rarely have the courage to discuss it all when those platitudes and paper expectations fail us.
I don’t have any brilliantly sculpted bits of wisdom to share with the world, but I do know we cannot endure and thrive alone. When we try to do this complex journey alone, we always fail. We need each other. We need community and to know that it’s not just us suffering through this, and that we matter in our lowest moments of pain and on our highest mountain tops of heralded victory.
So, when medicine fails us or the long-awaited hope feels like just one more broken dream, take time to grieve and process everything that comes with it. Take the time you need. But share your heartache with those who know, love, and understand you best — those who need no explanations and offer you grace and assurance that you will eventually turn out OK.
And maybe, just maybe, we can allow ourselves and each other the space to talk about what we carry, without rebuke or shame.
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.