The following article was written by Geraldine Scott and was published in the Eastern Daily Press on the 2nd May 2019. Please click here to read the original article.
‘I have a devastating illness, so why do doctors doubt my struggles?’
The brutal reality of living with a catastrophic disease that some people mistakenly refuse to accept has been laid bare by two women in a bid to shed light on the issue.
Jo Moss, 44, and from Norwich, was diagnosed with myalgic encephalomyelitis (ME) in 2006, a long-term chronic condition which has life-changing effects.
But along with 31-year-old Gemma Corvalan, who grew up in Raveningham, she is highlighting the “ignorance and disbelief” around the illness ahead of ME Awareness Week.
Mrs Moss, who worked a full time job and had an active social life before her diagnosis, said: “ME has robbed me of everything I love.”
She said: “I loved going to gigs with friends, and I loved to travel. I’m now confined to my bed due to severe fatigue, weakness and chronic pain, and I rely on carers and my husband for most things.
“I’m naturally a very sociable person, but I now live in isolation because interactions make me so ill.
Mrs Moss described living with ME as a “non-existence”. She said: “I’m alive, yet not really living. My life is on hold – I’m in limbo. I’ve lost my identity and purpose. I miss so much about the person I used to be, and about my old life. “
Her sentiments were echoed by Mrs Corvalan, who now lives in Cambridge with husband Javier, 37.
She was diagnosed with Me months after being injured in a car crash in 2011.
She said: “I now have no regular social life to speak off and have lost contact with most, if not all, of my friends from my old life.
“I cannot leave the house by myself as I rely on a wheelchair and spend most of my time in bed, apart from the odd trip to the cinema or to visit a handful of friends.
“My days are generally spent in bed with my two little companion cats, as my husband works full time to support us.
“In the simplest of terms, I hate my body. It brings me nothing but hardship and pain. I am but a shell of my former self. Still, I consider myself to be lucky as I have a loving and supportive husband who stands by me, and some loving friends.”
The deeply misunderstood condition affects more than 250,000 people in the UK. One in four are so severely affected that they are rendered housebound or bedbound – with some even reliant on tube feeding. Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, or even days.
Mrs Corvalan, a talented artist, has taken to painting as a coping mechanism for her illness. Artworks that should take weeks to complete can take months or years.
Less than £1 is spent each year on people suffering from ME and there is a chronic lack of funding for medical research. Many doctors still don’t know how to diagnose or manage the condition.
Mrs Moss said: “Sadly, there is still so much ignorance and disbelief surrounding ME. It frustrates me that even with all the evidence available people still accuse us of ‘faking it’. Why would I choose this life?
“What I would like people to understand is; ME is a severe, complex and devastating neurological disease that affects every part of my body. I am in constant pain and feeling exhausted is my normal.
“There is currently no cure or effective treatment for ME – most doctors haven’t got a clue what to do with me, so they do nothing.”
While Mrs Corvalan added: “A lot still needs to be done. Mainly amongst GP’s who still doubt the veracity of our symptoms and generally doubt patients and dismiss our struggles.
“I have had doctors tell me to drink more coffee, in a very dismissive way when I asked if there was anything I could do about my fatigue.
“These are the people we entrust our lives to and look to for guidance in trying times. The only way to combat this type of problem is by highlighting the realities and the struggles people with ME go through.
“If a doctor cannot accept our illness, there is no hope anyone else, including sufferers themselves, will.”
Mrs Moss said: “All we, the ME community, want is fair treatment and a chance for a future.”
ME Awareness Week runs from May 6 to 12. On May 11 Norwich will join 90 cities worldwide in a global protest for action for those living with ME.
For more information search Missing Millions Norwich on Facebook, or for more about ME visit www.meassociation.org.uk
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