The Times: ‘Sometimes I wished I had cancer instead of ME: at least people would understand it’

August 20, 2021


People with chronic fatigue syndrome have suffered more than just poor health

By Lindsay Gripton and Sean O'Neill

Chronic fatigue syndrome (CFS/ME) has devastated my life over the past three years, writes Lindsay Gripton. Shortly after having my beautiful little boy at the age of 40, I started feeling like my bones were leaden and climbing even a few stairs felt like a mammoth effort.

My mind felt foggy, my thinking slow and my muscles and joints ached all over. I assumed I was coming down with flu or that my hormones hadn’t regulated postpartum. I started having to nap in the afternoons and within six months struggled to lift my arm to brush my teeth or comb my hair.

Extracts

I’m a clinical physiologist, with a busy and highly pressured job in the NHS, helping brain and spinal surgeons to operate safely on children. I worried that I could no longer do my job well enough and was forced to drop down to two days a week, resting in between times.

My mystery illness was pushing my marriage, motherhood, career and mental health to its limits and with no answers or much concern from the NHS, my husband and I spent thousands of pounds on private consultations and treatments — MRIs, iron infusions, vitamin injections, physios, experimental off-label medications. Nothing helped and nobody seemed to care much once they’d taken our cash…

There were no treatment options available. Game over. Life, as I knew it, over. I struggled with the shame and the stigma. Over 20 years of working in the NHS meant unfortunately I was all too aware of the attitudes and prejudices faced by patients with chronic conditions such as CFS/ME and fibromyalgia — conditions without a known medical cause or cure.

I joined a Facebook group for medical professionals with ME/fibromyalgia and they swapped horror stories about lack of support and understanding in the workplace. So many accomplished health professionals, humiliated and forced to give up work after many years of dedicating their lives to care for others.

I felt fortunate that I had a supportive manager but felt scared and embarrassed to share my journey with my colleagues for fear of judgment. Like so many others, during the darker moments, I wished I had cancer instead of CFS/ME. At least people would understand it, there might be treatment and I would be able to rest without feeling guilty…

Read more for the story about Claire Higham who had ME, then Covid-19, and Long Covid:

“A huge amount of money is going into long Covid clinics, but they aren’t helping because they don’t really know what they’re doing. There has been so little research into post-viral medicine that they really are all at sea.”

“This is the time to put some serious money into biomedical research on post-viral illnesses. If they can unlock this and find a biomarker or a test, that would be incredible and would stop all the dismissal and disbelief.

“The experiences people are sharing on long Covid forums are so similar to ME — people are being dismissed, they’re told they need to do exercise, they’re told it’s all anxiety. I’m not denying anxiety is an issue, people are going to be anxious when they are ill, but that does not mean anxiety is the cause of their illness.”


Claire Higham
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