Rare Resilience During the Pandemic

Reprinted with permission from Findacure.org

Today’s guest blog is written by Polly Moyer, Co-founder of the Action for Mal de Debarquement Syndrome UK facebook page and founder of the Familial MdDS facebook group. Here Polly gives a perspective on the pandemic from someone with Mal de Debarquement Syndrome (MdDS) which is a rare neurological condition. 

Like many rare conditions, MdDS is multi-system, multi-symptom but the main symptoms are motion sensations of rocking/bobbing/swaying which are often relieved during re-exposure to passive motion.  Some of us also experience other symptoms including gravitational pull, visually induced dizziness, cognitive impairments, migraine and tinnitus.  There are many environmental factors that can impact symptom levels either positively or negatively.  Teaser – audio frequencies are a big factor for me.

‘I just want my life back’ 

‘My mental health has been affected and I’ve been crying a lot.  I know this is situational rather than clinical depression but I am usually more resilient than this.’ 

‘I wish I knew when this was going to end, will it ever go away?’

‘My work means so much to me and now it would be unsafe for me to do it.’

‘The reduction in my income means I can’t afford the diet I need to stay healthy’

‘I’m scared I won’t get health benefits if I can’t go back to work.’ 

‘I miss being able to see my family and friends.’

‘Symptom levels fluctuate so much, I never know how I am going to feel on any given day or even hour by hour.’

These are all comments I have heard from people since COVID-19 arrived on this planet, changed all our lives for the foreseeable future, and ended so many.  All these are also comments I’ve heard from people with MdDS over the years and from many other people with rare and more common conditions, including migraine.  While this report from NORD about rare neurological conditions gave me a ray of hope for much needed research, this blog from the BMJ also resonated with me and others, especially regarding the lack of understanding from family members and work colleagues.

My initial feelings were ‘Welcome to our world, I’m so sorry you had to join us and I am delighted you are feeling better now.  Please remember those of us who are used to social isolation due to pre-existing conditions but miss being able to share a hug with our friends.’  Hugging isn’t everyone’s cup of tea, I know, but for those of us who thrive on hugs, it’s a hard loss to bare.  But I am used to hard losses – my career, my ability to study for a PhD, my transatlantic marriage, my ability to fulfil my family role, my financial independence, and my trust in the medical profession were all casualties of getting MdDS.  Although my gem of a GP and wonderful neurologist restored my trust in doctors, I know others with MdDS and other rare conditions haven’t been as fortunate in this respect, having watched the live stream of a patient focused meeting about EDS held in Edinburgh BC (before corona).

However people with MdDS in the UK and elsewhere are some of the most resilient people I know and the same goes for many of the rest of the rare conditions community – hugs from members of the rare umbrella groups are some of the best ever. For the record, the last time I was hugged by someone I know deeply and well – who has been with me throughout my lived experience of MdDS and for a long time before that – was on Tuesday 25th February.  When someone who had had a major, hugely positive, influence on my life and the lives of many of my dearest friends died recently, we all had to rely on virtual hugs to get through it.

In the early days of the pandemic I went back to my roots as a reader and writer and was moved by Arundhati Roy’s work on The pandemic is a portal. In it she highlights the fact that historical pandemics have changed the way the world works, and that this one will be no different. It will serve as a gateway to a new world.

On a much smaller scale this approach has also helped me get though the current crisis and, like many of us, I don’t want to return to ‘normal’ if we ever get through it.  I saw the prequel and did not find it acceptable that nurses and other key workers were reliant on food banks.  Nor did I find it acceptable that people with rare conditions have been traumatised by being told that their primary care support could be withdrawn if they didn’t accept a ‘conversion disorder’ diagnosis or that so many of us get labelled with psychiatric disorders during our diagnostic odysseys.  My late Dad* and I both felt that MdDS is an equalities issue and I don’t want to return to a ‘normal’ where women’s health is frequently dismissed or where one of the men in the UK MdDS group reported that his diagnostic odyssey left him with mental scars.  Neither do I want to return to a time when ‘eminent’ people were standing up at conferences and insulting our researchers by saying that MdDS doesn’t exist.  I certainly do not want to return to a time when doctors laughed at people with MdDS or got cross with them when they didn’t get better from using prescribed medications or when people with MdDS reported that ‘doctors look at me like I am crazy and can be very cruel.’  But I will stay home for all doctors, including those who were not empowered to represent their profession well when working with patients with MdDS and other rare conditions.  And I will stay home for our researchers who are beyond awesome in both their research and in their honouring of patients’ lived experiences.

My new normal (aka Lockdown) has, as a result of the reduction in noise pollution, brought me this close (mime tiny space) to remission from MdDS.  But it is hell for some people with tinnitus whose symptom levels have increased for the same reason.  More than one person with tinnitus has chosen euthanasia over life with it and the same applies to people with migraine and MdDS.

I am writing this during pandemic as a portal, season 1, episode 108 (ish, I may have missed some) and don’t know what episode we’ll be on when you read it or what new new slogan will be in place then.  I am only here because of white woman privilege including financial support from my family and I have never felt more fortunate to have free access to green spaces and that I live in a great neighbourhood.  I met someone with lupus recently and both she and I hope that no-one will ever have to write a paper like this ever again.

 *This blog is dedicated to my Dad.  A GP for most of his working life, he also trained in sexually transmitted diseases and did front line service when HIV/AIDS broke in the UK.  It is also dedicated to Drs Dai and Cohen, two lead researchers into MdDS who have died in the last few years.

Update:  A few days after the publication of this blog (15th May) I found out that Professor Garner, the author of the BMJ blog, is experiencing COVID-19 related fatigue.  I extend my empathy to him and to others in similar situations and am relieved to know that there are some follow-up studies underway for people who have survived this virus but whose long-term health outcomes are, as yet, unknown.


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