Let me start off by saying it’s not just the people with chronic fatigue syndrome, or any chronic illness for that matter, that suffer. Those closest to them suffer too. It must be really hard, and really frustrating, to see the person you love struggling. I imagine it’s hard to know what to do to help.
So, what can you do to help? How can you support someone with chronic fatigue syndrome?
Be there. Listen.
Living with chronic fatigue (ME CFS) is lonely. Because you live with such limited energy, the majority of each day is spent alone at home. Those with severe chronic fatigue syndrome are bedbound, having to live with noise-cancelling headphones and sunglasses inside a darkened room due to the pain of light and sound. This means days out, impromptu coffee dates, noisy bars/restaurants are out of the question. Many people complain about losing close friends.
Send that person a message to let them know they’re not forgotten. Just a very short message of “how are you” can mean the world. If you’re able to go to that person’s house, great. Most importantly, listen to what they have to say. They’re likely not to have seen anyone else that day. Knowing you’ve still got the support of your loved ones is invaluable.
2. Be as patient and caring as you can be.
Validate and acknowledge what your loved one is saying. Because chronic fatigue syndrome is a multi-system disorder, they will have had to attend multiple medical appointments in which they are likely to have been questioned about their symptoms. They don’t need loved ones questioning them too. Chronic fatigue syndrome (ME CFS) is NOT a psychosomatic illness, it is a condition classed as neurological by the World Health Organisation. People with ME CFS face a lot of stigma and disbelief, as it’s an “invisible illness”. It’s impossible to “see” the fatigue and pain someone is going through. Make it clear to your loved one that you believe them, that you recognise that living with ME CFS is tough.
3. Offer to help practically.
Everyone hates chores. Understatement of the year! For people with chronic fatigue, just doing the dishwasher, washing up etc, can exacerbate symptoms. Just doing a food shop online takes an awful lot of mental energy. That might be all that person can achieve that day. Of course we still do those things but if often leaves little energy for anything else in the day.
Offer to pick up some essentials from the supermarket. Offer to come round and simply make a cup of tea. We’re not suggesting you come round and clean our houses (although if you want to, go ahead!) but little actions can mean the world. People with chronic fatigue syndrome (ME CFS) will often have had to either reduce their hours at work or give up their jobs entirely leaving them in financial difficulty. Offer to help them fill in the forms for disability benefits (although I warn you now, the benefits system is unbelievably complicated) as this can be a great source of stress.
4. Educate yourself on chronic fatigue syndrome.
Watch the film “Unrest” on Netflix. It’s a documentary film about Myalgic Encephalomyelitis (ME), produced by a sufferer of the condition herself, Jennifer Brea. It makes for tough watching, but this is the reality for those with ME CFS. Study the websites of the ME charities: Action for M.E., M.E. Association, MEAction. These websites have a really fantastic range of leaflets for both patients and carers and they report on the latest research in the area.
Note: Please be wary of any websites/companies offering a cure in exchange for money. No, no, no. Too many people with chronic fatigue syndrome (ME CFS) are ending up in a worse financial state from these sites offering “cures”.
5. Hugs. Gentle hugs.
Finally, this may not be everyone’s cup of tea but I do like a good hug. Not too long mind or too tight, but a hug lets someone know you’re there for them. But make sure you make it a gentle hug. The last thing you want to do is cause extra pain!
What NOT to do:
- “Have you tried…?”
People with chronic fatigue syndrome will have had these symptoms for months and months, many for years. They will have been trying everything out there to try get better. It is hugely frustrating to have people trying to “cure you” with something they’ve probably already tried. Instead, listen to the person with chronic fatigue (ME CFS), understand what it is they’re choosing to do to help themselves and support them in that.
2. “But we all get tired.”
Yes. Everyone gets tired. Life with children certainly is exhausting. ME CFS is not “being tired”. It is so much more than that. For me it is the feeling of having the worst flu constantly, running the marathon (with the flu and no training) AND being beaten up. All at once. Nice eh?
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