The invisibility cloak – Rachel's MS journey
Rachel talks to us about her MS journey, employment issues and the changes she’d like to see.
I feel like I’ve been wearing an invisibility cloak for most of my life. Ever since I was told I had myalgic encephalomyelitis (ME) at the age of 11, which might’ve been MS all along.
When I was finally diagnosed with MS in 2017 after having numb legs and feet, I was used to fatigue. And I was used to not being able to do as much as my mates or be as free-spirited. I also had to decline invites or cancel plans because of energy levels or having a bad bladder day. But for many years, I thought these were all ME symptoms, not signs of MS.
My mates would often get bored or lose some interest in me. And this made me feel invisible a lot of the time. I have a faithful few mates that have always been there for me. But I've lost a lot along the way because they didn’t have the patience for me.
MS in the workplace
I’ve also felt unsupported in workplaces because of my fatigue and “slowness”. An employer once told me that if I didn’t speed up, I'd be “let go”. I was working as fast as I could, I had no idea I was being slow. It was the best I could do.
I've since had jobs where I've sensed people's frustrations with me. But they knew about my MS so didn’t feel they could say as it’d be discrimination. It's a horrible feeling when you know people don’t have full belief or confidence in you.
Read about support and rights at work with MS
Hoping for change
Due to my fatigue, brain fog, concentration and memory issues, I struggle to take on new information and remember it. I’ll take longer to learn new processes and store the information. I need time and some allowances for that. And unfortunately, in the ‘dog eat dog’ world of jobs, I haven’t found many that allow for this.
Read more about memory and thinking
I’m currently still at home with my 1 year-old. But I know I'll need to find a job and I think I want one. I hope my next employer is understanding and patient.
