7 Ways to Support a Loved One With ME During ME Awareness Week

Know someone who has myalgic encephalomyelitis (ME)? A family member? Close friend? Acquaintance?

Want to help them but don’t know how? Or perhaps, what with your busy life, they’ve fallen by the wayside?

May 7th – 13th, 2018 is ME Awareness Week, so now is the perfect time to give yourself a kind but firm nudge to do something for that person in your life.

Here’s how you can help:

1. Send a text (or card by post) – I know you have a lot to do in your life, but how long does it take to send the occasional text? A minute? Two minutes?

How many people do you see a day? Hundreds, probably, when you count all the people you pass in the car, on the street, in shops, at work. Many people with ME are housebound and see the grand total of zero people a day. So while sending a text is just a small act for you, it could be the only human contact your friend/family member has that day. It could be the one thing that gets them through.

2. Offer to visit – Not everyone who has ME can manage visits, so ask if it is something they could manage. For those with severe ME, just trying to get through the day may use up all their energy. So if they can’t see you, it’s nothing against you, they likely really wish they could! And even if they can manage visits, often it can only be occasionally, so don’t put pressure on them but let them know you are there when they are up to it.

Make sure you arrange a visit in advance, don’t just turn up at the door! Also be aware that those with ME usually never know when their symptoms are going to flare, so they may have to cancel (don’t blame them for this, they have no control over the illness and are probably more sad than you about canceling).

If you do visit, offer to make the tea/pour the drinks. And if you are kind enough to take flowers, make sure you also cut the stalks and put them in a vase for them, otherwise they could be more effort than they’re worth. Be aware that the person probably can’t see you for long so when they say they need to stop, they need to stop.

3. Offer to help them practically – Ask if you can bring a meal or do some cleaning. Nobody likes to be dependent, especially on their friends, but, particularly for people with ME who live alone, household tasks can be very difficult.

If you’re popping to the shops, ask if you can pick something up for them too. Ask if you can get their prescription for them or buy a birthday card/present on their behalf. If your children go to the same school, ask if you can help with
drop off/pick up.

Offer to help with phone calls or administrative tasks such as filling out a benefits form. Not only do these require a lot of energy, they can also be very stressful for someone with ME.

If your friend/family member can get out, offer to drive them to a medical appointment or to the park.

4. Educate yourself on ME – Check out the Action for ME and ME Association websites. Watch the documentary “Unrest” which was recently shortlisted for the Oscars (you might find it a tough watch but this is the reality of the life of someone with ME – this is what they face every day).

While these guides are a great way to help you understand the basis of ME, remember that every case is different. Every one experiences different symptoms to a different degree. So make sure you also ask your friend/family member what it is like for them specifically.

5. Listen – Someone who has ME lives with this awful illness every second of every day and night. Sometimes they just need to let it out, to be heard. I know you want to cure them but you can’t so please don’t offer advice. Just listen. Recognition that what they are going through is tough can go a long way.

6. Believe them – Since ME is an invisible illness, it can be hard to realize what a person is going through. Believe me, it is an extremely debilitating and excruciating condition. An estimated 250,000 people have ME in the UK and yet they still face a lot of stigma and disbelief. They have enough to do fighting this illness without having to fight society too.

7. Ask them how can you can help – this is most important of all. Every one experiences the illness in a different way so don’t assume what is best for them.

Remember, your friend/family member has ME indefinitely so don’t do these things solely during ME Awareness Week. Don’t forget them. Just because they can’t see you doesn’t mean they’ve forgotten you so please don’t forget them. They need you more than ever. And while you may feel that you are doing all the giving in the relationship, I think you may find that, if you show some support, you gain a loyal empathetic friend for life.