Sam, 25, was diagnosed with M.E. five years ago. Before she became ill she was starting her dream career in catering.
“Before my diagnosis, I saw many doctors who did many blood tests but they always came back normal. I was always told ‘there’s nothing wrong with you,’ however, I was feeling far from perfect. Having such debilitating fatigue that I couldn’t sit up by myself or walk for more than a few meters without collapsing.
“Along the way I was told by many doctors I was “pathetic”, “I just have an anxiety” or they had “no idea what is wrong you but I can see you are really ill.” For a while I thought I was going crazy because every test was coming back normal and no doctors were believing me or knew what was wrong.
“I eventually found a really good GP who referred to my local M.E. service and got diagnosed it was such a relief. I often think if it wasn’t for that one good GP I would probably still be trying to get diagnosed now.
“Being diagnosed with M.E. and two other chronic illnesses has changed my life in ways I would never imagine. At the time of getting ill I was just starting out my career in catering. However a couple years into it I soon realised I couldn’t carry on, the very long hours and the fast pace isn’t the best for someone with M.E.
“I decided to leave work for a year to try and feel better and understand this illness and claimed ESA however in that time I just became more ill. Being bed ridden for weeks at a time and definitely not living my life as anyone in their early 20’s would.
“It affected relationships because not everyone understood or could handle the fact I am ill. Most of time after telling someone I have M.E. I wouldn’t get a reply or get “at less you can stay in bed all day”. Not everyone understands and I still believe we need more awareness. However, 3 years on I have started college part time and in a career I love!
“I have been quite lucky I haven’t faced a lot of discrimination. I have faced a lot of people not understanding and thinking I’m lazy and just can’t be bothered to go in because sometimes I have to take days off because of my condition.
“I feel positive about my personal future and still live a good life even with chronic illnesses. However, I don’t feel as positive about the future with scientific research. I still believe the UK government needs to spend more money on research and some of the medical profession needs more training in what M.E. actually is and how much it truly affects us.
“It’s hard living with this illness but even harder to get the medical profession who are here to believe in us. I still have trouble getting doctors to believe I am in pain and have been told things such as "your pain isn’t real, so there’s no one or nothing to help you". Despite this, I am very lucky because I have seen some great doctors, nurses etc. in my time who really do have an interest in M.E. and truly do want to do anything to help.”