Why I'm Choosing to 'Keep Calm and Carry On' Despite Remaining Undiagnosed
I am a 37-year-old wife and mother to one exceptional toddler. I am a dedicated volunteer and champion for rare disease awareness.
I am also a SWAN (syndrome without a name).
I have lived the majority of my adult life with a variety of confusing symptoms. I have undergone many diagnostic tests over the past 15 years and I have gotten no closer to an answer other than being told by my general practitioner that an autopsy would likely reveal all.
I laughed then, but after many chats with my new GP about my relapsing and remitting course of strange symptoms and seemingly anomalous and confusing EEG results, she suggested I perhaps learn to get on with it. “It” being my life.
I first felt a sense of defiance. No, I would not rest until my quality of life improved and I was able to make a way toward the life I intended living many years ago but never managed to achieve. I would not let pain, myoclonus, aphasia and the constellation of confusing symptoms prevent me from being the wife and mother I would like to be.
However, as a volunteer of a rare disease nonprofit who provides emotional support as well as educational resources to patients, I found myself becoming depressed as I watched others finding answers I had been searching for seemingly my whole life. Even in the face of wonderful and unwavering support in our group, I felt isolated.
The isolation wasn’t caused by the group or the members but rather my envy and lack of knowledgeable support from clinicians around me.
This year, I experienced the death of my mother and her twin; both had succumbed to a lifetime of chronic illnesses. They were ensnared in their complications. I spent most of this year thereafter awaiting a visa decision which separated my husband from his wife and young son.
During that time, I sought no healthcare. I struggled with the likely possibility I would fare no better than I had in all my years searching for the answers that never came. I decided this year to give in (for now), and to “keep calm and carry on.”
That means learning to modify my lifestyle in ways that, at the very least, reduce my pain and symptoms and accepting that, for now, I am stable on my current medications. I will take each day as it comes, breathe in deeply and remember that though I may be a “swan,” I am in no way less important than those around me with a diagnosis. I have seen a diagnosis given and just as easily taken away. I know a diagnosis and a name, while validating, does not make me any more or any less than anyone else.
I am proud to continue to support autoimmune encephalitis nonprofit for which I volunteer, and support all rare disease patients and swans as best as I can using my perspective and empathy.
I will keep calm and carry on.
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