I’d like to put in a trigger warning before you go on much further. In this episode, there is mention of medical neglect, medical abuse and suicide.
In this week’s episode I’m going to be chatting to you about being invisible with ME.
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Let’s jump straight in.
Today, 8th August, was the birthdate of Sophia Mirza. Sophia was bed-bound with very servere ME and was a victim of widespread ignorance and medical abuse. Her doctors couldn’t understand why she wasn’t getting better and, consequently, they didn’t believe that ME was a physical disease. Sophia was forcibly taken from her bed, her home by social workers, police officers and doctors and was taken to a psychiatric facility where she received inappropriate treatment and care. Sophia died as a result at the age of 32. Her post-mortem revealed that she did have severe ME. Unfortunately, this same inexcusable abuse still goes on. You can read more about Sophia’s story by visiting www.sophiaandme.org.uk
Today is Severe ME Day and the start of Severe ME Week. You can follow posts online using the hashtag SevereMEDay if you are able.
The day was originally founded by the 25% ME Group here in the UK and it has since been taken up and honoured by various organisations around the world. If you’d like to find out more about the work and support that the 25% ME Group carries out, please visit their website at www.25megroup.org.
Severe ME Day is considered a day of remembrance of those who suffer from, and those who have died from, severe ME. It’s also a chance to educate the public about Severe ME and push for better treatment and research.
There is an estimated 17 to 30 million ME sufferers worldwide. 25% of them are severely impacted by the condition. This means that there are between 4.25 and 7.5 million people across the planet who feel like they are existing. Not living, just existing.
People with severe ME are usually housebound, bed-bound, in need of care (sometimes 24hrs a day) just to carry out what others deem to be normal daily tasks. Tasks such as using the toilet, eating, drinking and even maintaining personal hygiene. Quite often they spend their time lying in darkened rooms and in the most serious of cases, people may need medical intervention such as feeding tubes.
This condition can have a devastating impact on people’s mental health as well as their physical being and for years, patients have suffered with misconceptions, misunderstanding and mistreatment. Sadly, this has led some severe ME patients to take their own lives. Others have passed away due to the compounded effect this illness has.
It is usual for people with severe ME to have between 50 and 100 separate symptoms so it’s no wonder that the impact of these combined, is overwhelming and hard to communicate to others.
The severity of this illness often makes it impossible for people to have contact with loved ones, doctors or the outside world and these are the people who are generally invisible. By helping to mark SevereMEDay and by continuing to promote awareness throughout this week, we can help make the invisible visible. This can help end years of misunderstanding and misrepresentation about ME. All we want is to be believed, listened too and for research to be done to come up with a cure. None of us need to battle with ME and to also battle with having our condition taken seriously.
For those of you caring for or living with someone with severe ME, you may be asking how you can help them. Most importantly please believe them and respect them. It’s an awful illness to begin with. Please show them that you know and understand that.
Please keep in mind that a flare up of symptoms after activity or stimuli is a key factor. The activity or stimuli may be tiny by your healthy standards and you may not have even noticed it; but to us, it’s huge. A small movement, background noise or light, could be enough to zap our energy. Consider shutting doors to help reduce noise or if you are watching TV nearby perhaps use headphone. Also be aware that if they seem energetic, this may be a sign that they are doing too much and running on adrenaline – check in with them and ask if they need a rest.
Severe ME is very isolating. We may be too ill to communicate or even see a doctor. You may wish to try to help ease their isolation by including them as far as their illness will allow. For example, you may wish to take photos of any changes in the neighbourhood or video a special event. You could send a card or even ask if they need anything from the shop. Showing that we have been thought about can help to break the isolation and the feeling of being invisible.
Although we have ME Awareness Day in May and SevereMEDay in August, there’s still room for more. In September the #millionsmissing campaign will tie our common threads together by taking to the streets and campaigning from our beds to demand the systemic change needed for health equity for the #MillionsMissing. To find out more, visit www.meaction.net
That brings me to a few points from today that I’d like you to take away from this:
1. The #MillionsMissing is a global campaign for health equality for ME. They use the term millions missing to show that not only are we unable to work or socialise, many are missing careers, missing time with family and, for those severely impacted, missing simple moments like going out in the sun, reading a book or just chatting to a friend.
2. It is possible to be visible when you are able by being on social media, in chat rooms, being in online groups, writing to publications with your story or having an advocate do this for you.
3. You are not alone. As someone severely affected, there are between 4.25million and 7.5million people worldwide who are also impacted this way. They, and you, make up the 25% group.
So that’s it for today everybody. I’ve talked about those who are severely affected by ME and the feeling of being isolated and invisible. This SevereMEDay and severe ME week, please take some time to help raise awareness and support the work of the likes of the 25% Group and the #MillionsMissing campaign.
Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk
My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)