You are the reason I’m writing this Blog! I don’t find much pleasure in writing about my illness. I’m trying to find words to say after just receiving news that I’ve lost a dear friend from cancer. Yet I need to speak up and write this before ME awareness day.
I really don’t like to moan and have no reason to. On days like today I realise just how blessed I am and what a gift life is. My ME is mild compared to many, I made a good 95% recovery from my first diagnosis until this recent relapse, yet many have been confined to their beds for decades. While others were stuck in their houses and beds I lived a life that was exciting, challenging, rewarding, active and full to the brim!
When I was first diagnosed 18 years ago I was ashamed to admit what I had. (I’ve blogged on this before: I’m coming out; believe ME )
I cried after leaving the Doctors surgery. ”Chronic Fatigue” was the diagnosis then, but I wasn’t just fatigued, I felt so ill and unable to function. Everyone gets fatigued, they didn’t understand. I felt like a complete hypochondriac. No further help or advice was available, it was a case of ‘learn to live with or it will get better on its own.’
I was proud to work in the NHS. I always thought if you got sick, someone would be there to help you. At the very least, I thought doctors would be sympathetic and understanding and offer some helpful advice. I wish I hadn’t sought the second opinion from my Occupational Health doctor who concluded that ‘I was just looking for a way out of work’.
I shunned the label and everything to do with ME. Two of my colleagues also had to give up their profession because of the same illness. I had great respect for both of them, but I didn’t talk to them about it. I thought colluding with others would just make me seem weaker. I’ve never been a quitter and hate to be defeated, but ME had totally defeated me.
Regrettably, the greater my recovery became, the easier it was to distance myself from that loathed ‘ME’ label until I denied it altogether.
Well, they say pride comes before a fall, and my fall caught up with me 8 months ago!
The second time I was diagnosed, I cried again after leaving the Doctors surgery. “ME” was the diagnosis this time.* After years of carefully tight roping my way to a near full recovery, I knew exactly what that diagnosis meant…
Months, maybe years of only feeling half human, isolation, frustration, pain, helplessness, and that endless, crushing fatigue all top the list.
I wasted no time in reading and researching the illness that I turned my back on all those years ago along with those medical professionals. This time, however, I discovered something that challenged me to think again about keeping my illness secret; the internet and social media!
As soon as I started connecting with others and reading of other people’s battles, I was shocked to discover that I was far from a lone voice with one bad experience with the medical profession. I came across endless stories of people who had been written off and expected to just ‘live with it’ or offered ill researched advice that could, and did, do more harm than good.
My frustration was initially with GP’s but I was shocked how entwined the roots of this problem were woven into politics. I was shocked how little funding is made available for researching this disabling illness, I was shocked how advice from experts in the ME field has been ignored, I was shocked how the NICE guidelines that GP’s work to are disputed by ME charities, I was shocked how few GP’s even cover ME at medical school, I was shocked how hard it was to get access to a decent specialist without a huge waiting list and it costing the earth. I was shocked that nearly 20 years on, very little had changed.
This time, I realised that standing by other sufferers was essential to get our voices heard. Far from seeming weak, there is strength in unity. There may not be any cure on the horizon for people with ME, but we can fight for better research, understanding and access for help that so many people desperately need.
There is nothing more likely to get me motivated for a cause than seeing injustice. Illness can, and does happen in a blink of an eye to anyone. The suffering that the illness brings can’t be avoided, but we can help ease the additional suffering that many face from fighting a system that remains ignorant to what living with ME is like.
For some, all they can do is struggle from one day to the next often without leaving their beds. For others, the energy they have is put to trying to research and understand their illness for themselves. Having spent months searching for answers and seeing the early signs of my own recovery on the horizon, I’m now starting to use my energy in uniting with people who have been cast aside by the medical community and a harsh political system that is suspicious and penalises those that are unable to work.
I wouldn’t want anyone to be in my ME shoes. My ME is mild/moderate yet it has still turned my world upside down and inside out. However, I’m ok. I’ve got a wonderful husband and family; incredible friends; my home is secure and I can afford to pay for the supplements, good nutrition and advice that is slowly helping put my wheels back on track once again.
I’m chilled by those that live alone, have lost their jobs, whose homes are under threat, who have to rely on foodbanks and a failed benefit system that doesn’t understand to keep their heads above water.
I’m so ashamed that I turned my back on fellow sufferers all those years ago. If this is you, I would like to dedicate this awareness day to you and offer you my sincere apologies. It’s been a hard lesson to swallow, but I’m ready to take your hand and keep pushing together for the recognition that this misunderstood, marginalised, horrible illness deserves.
(*ME and Chronic Fatigue Syndrome are often used interchangeably. People with the illness often don’t like the term CFS. Fatigue is just one of the many symptoms of the illness and the label masks the severity of their condition)