Tackling attitudes
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Tackling attitudes

From InterAction 105, published September 2020

When Emily Snow’s M.E. was so debilitating she couldn’t even stand up, never for a moment did she think she would one day become a paramedic. She tells InterAction how she is now drawing on her experience to help others.

They called my name and I walked across the stage. Dressed in the far too hot gown and the funny hat, a piece of card was placed in my hand and there it was. A degree. Something that I’d always wanted but for a long time didn’t think I would ever have.

I came down with a viral infection on my 15th birthday and nobody thought anything of it. A few days off school and I’d be back to studying for my GCSEs. At three months they were calling it ‘post-viral fatigue’ and by a year they called it M.E. I was desperate for a diagnosis, to understand what was wrong with me. In hindsight, the label was both helpful and terrible, a blessing and a curse, but I didn’t quite realise this to start with. I felt empowered by knowledge but it took me by surprise when I began to encounter disbelief and misunderstanding.

Friends stopped talking

You don’t think people are going to question how you feel. You don’t think they’ll imply you’re “making it up” or that “you’d get better if you wanted to.” You don’t think people will dismiss your illness as “just getting tired.” You don’t expect your friends to stop talking to you or for healthcare professionals to treat you differently when they “find out.” As my health deteriorated, my friend gave my concert ticket to someone else because she didn’t want to sit in the wheelchair area with me. A paediatric neurologist stood at the end of my hospital bed and asked me if I wanted to go to university. Following my answer, he said “Ah, she’s a high achiever, they get very stressed.” and walked away; I was there because my hands hadn’t moved for a week. An emergency department doctor told me I was fine and could go home, seemingly unconcerned that I could now no longer stand.

It wasn’t all terrible, I met some wonderful people; the nurse who bathed my hands in warm water and the paramedic who gave me pain relief and said “I believe you.”

Learning to walk again

At my worst I was in a great deal of pain and so exhausted by every movement that sometimes opening my eyes was too much. I became stuck in a bed downstairs and needed help to do everything. I don’t know what the turning point was. I let myself rest and trusted my body. I took medication for pain and to help me sleep. I had my mum and my sister and a family friend, who will always feel like family, support me through everything. I eventually got a stairlift that allowed me to sleep in my own bed. I had a cat that sat with me no matter how terrible I felt. I don’t think anything specific helped me to start improving, I just did. Slowly I began to move a little more and enjoy a trip out (if only to the supermarket!). I learnt to walk again, I could eventually write and think clearly. I wasn’t suddenly better or ‘back to normal’ (mind you, when your benchmark for feeling ‘normal’ is you at 15, you don’t really ever go back to that same ‘normal’). Slowly I did recover and, by the age of 23, I had not only achieved a degree but also a professional registration as a paramedic.

This gives me an unusual way of looking at M.E. I was a patient and now I’m a healthcare professional. I have heard ignorant statements from colleagues but now I am in a position to educate them. I have treated people with M.E. and helped to improve their quality of life.

Covid fatigue

Just recently though, I have noticed a strange thing is beginning to happen. I have seen the headlines about the Covid-19 patients who aren’t getting better and I can’t help but wonder if attitudes might change.

Will Covid-19 patients be told they’re making it up? That they should try harder? That maybe it’s psychosomatic? I just have this feeling that it won’t be that way, Covid-fatigue will be different, special, because it’s related to ‘the’ virus and not some random one. This thought makes me angry, but we must use this time to educate and advocate. It shouldn’t take a global pandemic to get the world thinking about and funding M.E. research, but we need to grasp this opportunity.

Some of us get better and I truly hope that one day we all will. I hope every Covid-19 patient with post-viral fatigue recovers but maybe it will take a change in attitude for that to happen.

From InterAction 105, published September 2020