I know I’ve said told this story before, and I’ll probably tell it again – which, to be honest, only emphasizes the point I’m about to make.
When I was 19, maybe 20 I visited a neurologist at my local hospital. I was terrified. What could I possibly have that was so serious my GP needed to send me to the hospital? Hospitals were a foreign place for me. In my mind, they were a place only for the sickest of the sick. I took a friend with me on that visit, it wasn’t something I was comfortable doing alone. I was in my second year of university, my second year of living some 7 hours’ drive away from my family. I was still learning how to be an adult, it was my first year of flatting; my first year of bills, cooking, cleaning and just generally looking after myself.
We walked into that appointment with no idea what to expect, only a glimmer of hope that maybe this would be the day someone finally knew what was wrong. At this point I’d already been shuffling from GP to GP, only for each of them in turn to tell me some other trivial nonsense about what was wrong with me. Depression, cholesterol, not eating healthy enough, not eating enough at all, stressed… anything to push me away and make their life easier. No one wanted a challenging patient, they wanted the easy ones, the ones where the solution was straight forward – here’s some medication, you’ll be fine soon. But that wasn’t me, and (thank God) I didn’t give up. So anyway, we headed into this appointment at the hospital and she began by questioning me about my lifestyle, how much do I exercise, what’s my diet like, how much alcohol do I drink. All fairly generic questions, awesome, I thought, she’s getting a good understanding of what’s wrong. Then she preceded to tests, simple ones, all things my GP had already done, eye movement, reactions, heart rate… “It’s not neurological” she declared and then something along the lines of how she couldn’t help me and I should drop out of Uni, go back home and spend a year in bed resting. I don’t remember the exact words, by this point I was pretty stunned.
I left the appointment confused, hopeless, stressed and angry. I had no idea what I should do next. All my life, I’d been taught to trust and respect professionals, she’d studied for years to earn her doctorate in neurology right? And that’s when I truly started to believe I was making everything up myself. Maybe I wasn’t really ill, I was just dramatic, maybe it was depression and I was just making excuses, maybe my legs feeling like lead and not carrying me to the grocery store were just me being lazy and useless. Maybe it was all in my head.
Please know, I’m not telling you this so you’ll have sympathy, I’m telling you this because it is 100% wrong to tell someone with their whole life ahead of them that no one can help them. Especially if this someone is vulnerable and holds you in high prestige. There was no offer of referral, no suggestions for what I could try next, no sympathy for a young adult whose entire existence had just been questioned. I trusted the hospital and I was severely let down. Thank goodness I had a good GP by this point who didn’t give up, who vowed to continue researching and who wouldn’t let me give up either. Without her, who knows where I’d be today, or if I’d even be here at all. I understand that the neurologist couldn’t help, that she didn’t know what to do, and I respect her for admitting that she didn’t know how to help me, but please, please if you are ever in a position of power over someone, be very careful what you say to them. You might just cause more damage than you ever intended.
That one sentence probably meant nothing to her, I doubt she’d remember if someone brought it up now… 6 years on. But I remember, and I don’t think I’ll ever forget.
This post is Part 11 of 52 in the series – A Year of Growth.
The series is a celebration of the first anniversary of The Truth About M.E and is designed to help me grow through my illness throughout my second year of blogging. I look forward to having you along for the journey!