Guest Blog: The Shame

June 21, 2021

I’m ashamed to say I have M.E.   

I’ve collapsed in the street and when I’ve managed to explain that I don’t need an ambulance, it’s just M.E, I see the compassion disappear. As if I’ve said, don’t worry, I just want the attention.  

My M.E. isn’t that bad anymore. I’m not always bedbound. It’s been 27 years so I don’t really know what being normal is supposed to feel like. But now I can disguise how I am feeling.  

On good days I can walk around a shop and buy food as long as I don’t carry a heavy shopping basket or stand in a queue. I can walk slightly further to the non-disabled parking bay because if I use my blue badge to park in the disabled space I’ll worry that someone will see me walking and judge me harshly.  

I drive home and then sit in the car pretending to be busy so I don’t have to talk to my neighbour because talking and standing will wipe out the next two days. They’ll also wonder why I’ve gone from seemingly normal to holding onto the fence and walking like a spaceman.  

If I’m on a bus and a person with a pram is getting off at the same time, I wait until the next stop, or hide behind other passengers, so I don’t have to look like a selfish person for not helping. I never sit in the priority seats in case I’m asked to move for a person who’s visibly in need. Mostly I avoid buses.  

I’m entitled to having a Disabled parking bay outside my home, but my neighbours would know I was ill and question why I seemed perfectly fine walking the dogs the other day.  

I suspect one of my neighbours knows because she no longer asks, “How are you today?” she asks, “How’s your health doing?” I don’t even like sympathetic people because it puts me on the spot and there’s never an easy explanation.  

I was taken to hospital with a suspected heart attack once because of bad chest pains. Then my legs collapsed. I told the doctor’s I felt it was probably M.E. and they said, “No, M.E doesn’t do that.”  

When eventually I was told that I was fine and all tests were normal, they no longer cared that my legs still weren’t working because they knew I had M.E and M.E. symptoms don’t count. 

I started having different symptoms. Numbness, brain zaps, collapsing without warning. I was checked out for Multiple Sclerosis. I was disappointed not to have it. I desperately wanted to have something people recognised as life altering and didn’t need to be explained.  

I was using my wheelchair that week, the doctor looked concerned and tried all the tests. When it turned out I didn’t have MS, his attitude changed towards me. He looked at me like I was a con artist.  

I never blame M.E. for making me feel ill, I always blame myself. I blame myself for putting away the washing, for texting too much, for standing in the shower, for taking jeans out of the wardrobe, for lifting a heavy shoe, for reading, for writing this… 

Ironically, I have had some good things happen to me because of my 27 years with M.E. Looking back: 

  • I wouldn’t have met my husband if I didn’t have a relapse, which prompted me to leave my boyfriend because he couldn’t cope with looking after me again.  
  • I wouldn’t have got my beautiful dogs if I’d been able to work full-time.  
  • I wouldn’t look young for my age if I’d been able to have a social life.  
  • I wouldn’t have found out who my real friends were if I hadn’t been ghosted by the ones who couldn’t handle the tedium of illness.  
  • I wouldn’t have experienced the joy of symptom free days. 

I can’t yearn for what might have been if I hadn’t had M.E. It’s too late for that. Doctors have been my prison guards. I am ashamed to say I have M.E. but the real shame lies with the medical profession.  

If their attitude had been at least as good as it is for others with a chronic illness, if they chose to believe me and treat me with fairness then perhaps I wouldn’t carry my shame and the stigma associated with this medical condition would have been extinguished decades ago. 

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