November 29, 2017
"The worst thing is feeling so helpless, that I can’t find anything to work for Abbi, or help her – and battling with other people and the school, and close family and friends, who don’t understand. I don’t talk to people about it anymore, because they don’t understand. It makes us look inward – Abbi and I are trying to survive this together."
Helen’s daughter Abbi, 16, has had M.E. for two years.
"Luckily my employer is very supportive, but it is very hard, particularly the battle we are still having with the school", Helen explains. "It’s like Abbi’s not allowed to be a teenager and also be ill – she doesn’t fit with their idea of what chronic illness looks like.
"Two things have helped massively – the specialist M.E. clinic that is treating Abbi, and Action for M.E.
"I haven’t reached out as much as I could, and it took someone at the charity to say 'we can help' for me to realise help was there. After speaking to Action for M.E., I felt reassured that I wasn’t just being a stupid parent, and that I do have a right to ask for this help for Abbi. Knowing this really helped – as did signposting me to the individual healthcare plan, which has been really useful.
"After working full-time and then coming home to look after Abbi, this combination of moral support and practical support has really been what I needed.
"If someone told me they or their child had just been diagnosed with M.E., I would tell them to reach out for help as soon as they can – I know it’s a hard thing to do, but it’s so important. I thought that because Abbi wasn’t so severely affected as some, I minimised it, and didn’t think about the emotional impact. The help is there – make sure you ask for it."
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