“Graham is an amazing encouragement to me when I’m getting into a downward emotional spiral. He’s not unrealistic; he knows how bad things are. But he keeps me focused on happy things and reminds me that although not everyone with M.E. gets better, some do!”
This is what Graham’s wife Carina, who has M.E., told us when we asked what Graham’s support means to her. “Even when I’m convinced tomorrow’s got to be worse than today, he points out that it could actually be better!”
Family members of people with disabilities sometimes don’t recognise themselves as carers; “it’s just something we do”, is a phrase we frequently hear. But it is often they who provide the around-theclock care to their loved one in need, and in the case of M.E./CFS, this role can come with its own unique set of challenges.
Lack of understanding
“Some members of our wider family have lots of difficultly understanding her illness, which can be upsetting”, said Kate, whose daughter was diagnosed with CFS in November 2016, just before she turned eight years old. “My daughter’s school attendance has been terrible, and it was difficult to explain to them what was wrong.
“Myself and my husband work, and we rely on my parents to look after her three mornings a week. But they are getting old, and may not always be able to do this. I am unsure what would happen if I had to give up work to look after my daughter. It is a concern at the back of our minds.”
Helen’s story echoes that of Kate’s. “My 16-year-old daughter has had M.E. for over two years. 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. It makes us look inward – Abbi and I are trying to survive this together.”
Luckily, says Helen, her employer is very supportive, but there are many other issues to contend with, not least the attitude of Abbi’s school. “We are still battling with them. 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.”
Support is available
Helen found it difficult to reach out for help at first. “I thought that because Abbi wasn’t so severely affected as some, I minimised it, and didn’t think about the emotional impact.” But she says that after speaking with the Information and Support team at Action for M.E., she realised that support was there. “I felt reassured that I wasn’t just being a stupid parent, and that I do have a right to ask for this help. 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.”
Helen’s advice? “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. The help is there – make sure you ask for it.”
Do you care for someone with M.E.? Could you help us raise awareness by becoming an Action for M.E. media case study? You can share your story via our website, or contact us to ask for a case study questionnaire by post.
Carers Week 2018 takes please from 11-17 June. To find out more visit the Carers Week website or call 020 737 84980. Download our booklet, Caring for somebody with M.E, or contact us to request a paper copy.