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10-16 June 2024

Debbie shares her experience of caring for her daughter Alex who has severe M.E.

“I am a full-time carer for my daughter Alex. She became unwell at 21 and is now 30 years old. Alex has had severe M.E. for all this time. She couldn’t return to work, and she’s never got better. 

“Caring and supporting Alex physically and mentally has definitely had an effect on my own health, with chronic stress being the main concern. I am physically and mentally exhausted to the point of hardly being able to function at times.  

“The constant worry, the non-stop fight to be believed and to receive help from the NHS, family and friends, trying to keep relationships going, financial concerns, and being incredibly lonely; have all made me feel very disconnected from the outside world.  

“I have little time for self-care. I do all the physical caring for Alex, which can be demanding, and I have started caring for my elderly parents. I have been coping with the menopause for years in silence and I developed ‘lichen planus’ a horrible autoimmune disease. I also over-eat for comfort which impacts my health.  

“Financially it’s been tough. I had to give up my cleaning job. We’ve have had to pay for nearly everything for Alex. The long waiting lists on the NHS and lack of healthcare support has meant paying for many different private specialists. We’ve had to spend every last penny and use our savings to fund it all.  

“But I care for Alex and my parents unconditionally. I wouldn’t have it any other way. I pray every single day that I can keep going to fight the fight along with Alex for as long as is necessary. And I hope that one day there will be more help and recognition for people with M.E. and for the all the incredible, brave carers that are out there.”

With thanks to Debbie for sharing this story.

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