Your voice matters
You could never say the words ME never mind recognise the condition, I built up the courage before each appointment hoping maybe this one would be different and that perhaps I would be taken seriously this time but in the end, I never was, appointment after appointment I left with heavy eyes and an emptiness in my heart, having to explain myself all the time was the most exhausting part for years. The dismissiveness became normal and what I expected at each appointment, part of me felt a relief when I was discharged although things weren’t any better they were very much worse, I was slipping into the hell that is severe ME I was relieved that I wouldn’t need to sit through another degrading appointment again, it shouldn’t be like this, but sadly this is the reality for millions.
I remember at the start of it all I would get asked questions like “Were you feeling anxious today” or they would say it’s normal for teenage girls to collapse I remember the times I was in the hospital I felt almost inhumane and that my illness wasn’t serious my mum telling them that I have ME and the doctor said something along the lines of “oh yeh you often find increasing activity helps that” I just couldn’t believe that it felt like only I knew the severity of this disease and I just felt so hopeless.
I sat through each appointment listening to the degrading “advice” holding back tears as I learned how to advocate for myself, As time went on I felt that I should stop speaking up against doctors who I felt were never going to listen I was so drained and exhausted from explaining myself, at sometimes, I felt what’s the point it’s been years, and they’ve never heard me all I ever wanted was to feel believed I wished for someone to understand for someone to listen and know just as much about my illness as I did. I’ve learnt more from ‘strangers’ online than I ever have from any doctor, I’ve found comfort and felt emotional when someone would message me saying that they found comfort in my posts and that they relate because for so long I felt alone in what I was going through.
In the past year especially I realised the importance of my voice when I started posting awareness videos I felt my story or my voice would probably not make any difference, but as time has gone on I’ve felt more free to share my opinion and not be influenced or judged by others and stand up for what I think is right and for as long as I’m able that is what I shall continue to do it’s the thing I feel most passionate about, those doctors may not have listened to me but thousands of others have, I’m so grateful to have been given this opportunity to share these words with you all, your voice matters and makes a difference in this world never let anyone make you feel otherwise, Soph