On being voiceless...

I’m happy that ‘equality’, ‘diversity’ and ‘inclusion’ are rapidly becoming buzz words. It feels good to see Labour values coming into management-speak and I recently took a workplace training course in ‘Inclusive Leadership’. My only problem- that Session One happened the day after my first COVID vaccination, when one of its side effects was that I simply could not speak. This isn’t unusual for me, but it still felt embarrassing that aphasia had struck again and this time in front of a group of strangers. I consoled myself that at least I was giving the other participants valuable practise in being ‘inclusive’. By training Session Two, another participant was struggling with the same issue on the day after her vaccination. I felt pleased that at least I had paved the way and made it easier for her to admit she also had a difficulty. My aphasia is one my autoimmune symptoms, so no real surprise it was part of my immune response to the vaccine. Both my thinking and speech become slow, hesitant and incredibly hard work. Then random nouns simply go AWOL. I know they’ve gone in advance, but there follows a battle to find a suitable synonym before it is needed in the sentence. None of this makes for fluent speech and its exhausting.

Women of my age, working in science are quite used to feeling and sounding different. Through our careers, we’ve found ourselves being the ‘token woman’ at the table. Tasked with representing 50% of the population using our single voice – and all too aware of how high-pitched we sound relative to every other voice in the room. During my recent training I learned how being the only representative of your protected characteristic can leave you either silenced or strident, and that neither are effective. The key to positive change is for decisions to be made by a diverse group of people who feel sufficiently safe and included to speak openly about what they truly think and how they feel.

One good way to achieve this is to have role-models - people in visible positions who look (and sound) like us, so we can aspire to emulate them. I became fully aware of their value when, after a bout of flu in 2012, I developed auto-immune arthritis and had to adapt to being disabled. My acceptance finally came when I considered the set of Disabled Scientists in Cambridge Labour. A niche group indeed, but one that included Stephen Hawking. It felt good to be suddenly part of such a small but cool group. The concept of a scientist with a phenomenal brain inside a wonky body was a romantic one, and Stephen’s voice-synthesiser only added to his mystique.

And, of course we also have Dorothy Hodgkin: not just any Nobel Laureate, but a very rare female one with autoimmune arthritis. Maggi Hambling’s portrait of her emphasises Dorothy’s damaged hands as they multitask. But I find myself wondering if this classic image of her busy being a scientist truly captures the reality of living with autoimmune disease. Its highly likely that Dorothy also struggled to manage fatigue and brain-fog during periods of active inflammation. We nearly all do. On those days, when autoantibodies run riot, everything we do feels damped by a viscous fluid. It is exhausting, but we don’t like to talk about that, because no scientist wants to be considered slow-witted or even lazy. Although better treatment can now control many arthritis symptoms, no treatments yet deal with fatigue or brain-fog or, in my case, the bouts of aphasia. But if we allow shame to stop us from talking about these issues, nothing is likely to change. Fellow clinical scientists may not even realise this is an area in desperate need of more research funding.

And this is where COVID-19 comes back into the picture. Recent ONS data indicates over one million people in the UK dealing with long-covid – and many of its symptoms look classically autoimmune, including a statistically higher prevalence among women. Due to their high exposure to the virus, many health care workers are talking, for the first time, about fatigue and brain-fog. They haven’t been silenced by shame, because these are new, abnormal symptoms to them – only a year ago they were full of enthusiastic energy. A positive step is that NICE have recently stopped advocating ‘graded exercise’ as an effective treatment for chronic fatigue. Its emphasis on ‘trying harder’ felt cruel and came close to victim-blaming. Meanwhile many of us long-term ‘post-virals’ have renewed hope that, with so many more voices openly talking about fatigue and stamina-impairment, a change in attitude and research objectives may, at last be on the cards.