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5 Ways to Support a Friend With ME Without Being Condescending

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One of my friends recently asked me about things she could do to support a friend with myalgic encephalomyelitis (ME) (not me, we live 200 miles apart) without coming across as condescending. Personally, I’ve never felt that being offered help is condescending, but that’s the opinion of one person and there’s 250,000 of us in the UK, so I decided to write down some things that I always find helpful.

As a person with ME, I rely on my friends and family to do a lot of things for me, from little things like making a cuppa to full on care. Obviously, I don’t want my friends actually caring for me, and I’m pretty sure they don’t want to do that either, but there are loads of things you can do to support your chronically ill friend. Every person with ME has different needs, so don’t treat this as gospel, but I hope some of these suggestions are useful.

1. Food and drink

Most people take cooking for granted, even if it’s an unwanted chore at the end of a long day, but your friend with ME may not be able to cook at all. Between the standing, the chopping, and the brain fog meaning you forget the oven is on, cooking is incredibly difficult at best. I am always very grateful to anyone who comes bearing food (especially if that food is pizza) because when I’m home alone, I tend to eat ready meals, cereal and yogurt. As much as I love cereal, eating it three times a day gets a bit old. Sometimes I don’t eat at all because even cereal is too difficult to deal with. It can be really hard for a person with ME to eat a balanced, healthy diet, for the simple reason that they can’t cook an actual meal. You don’t need to rock up and cook a three-course gourmet meal for your friend, but making them food that doesn’t come in a plastic tray will certainly be a huge help.

The same goes for making a cuppa. It doesn’t seem that hard, does it? You probably do it five times a day without even thinking about it, but if your friend has ME, it can be a huge undertaking. Navigating heavy kettles, boiling water and four-pint bottles of milk is normal for you, but can be a hazardous activity when you have shaky hands, poor grip strength and muscle weakness. Offering to make your friend a cup of tea (decaf if your friend can’t tolerate caffeine) may be the only way they get a hot drink. This is especially important in the winter as we often can’t regulate our temperatures and need to keep warm.

2. Doing chores

I know, I know – no one likes housework and offering to do someone else’s is a form of torture that should be sanctioned by the UN. Unfortunately, as your chronically ill friend has limited energy, this is often used on things like breathing and blinking, so housework falls quite low on their priority list. This is before you factor in that they probably can’t lift heavy things, stand for long periods, bend or crouch, and they are likely to drop anything they pick up.

I’m lucky as I have my husband who deals with all of the housework, and when my friends come over, they are more than happy to wash some dishes to help him out. That’s all it needs to be. You don’t need to spring clean their entire house to be helpful, but washing a few dishes or throwing the vacuum around can make the world of difference. It’s one less thing they need to worry about, and having a messy house can be a huge sort of stress, especially if they were a neat and tidy person before they got sick. Having an untidy house causes me no end of stress, and the fact I can’t clean up myself is incredibly frustrating. Having people around who are happy to pitch in is a huge weight off my mind and does wonders for my mental health.

3. Going out

You might have noticed that your friend is reluctant to go out, and this is because going out can be very stressful when you have ME. By the time you’ve checked for accessible venues, made sure there’s nearby parking and tried to work out how long you’re well enough to be out for, you’ve already used all of your available energy. There’s no more spontaneous daytrips or random nights out, as everything needs to be planned well in advance so your friend can rest up beforehand. Even resting doesn’t guarantee that they’ll be well enough to go on the day. There are loads of things you can do to help your friend keep up some semblance of a social life.

Offering to drive can be a huge help. A lot of people with ME find driving difficult, or are unable to do it altogether. It’s a lot of brain power that someone with cognitive dysfunction just doesn’t have, as well as being physically stressful. If they have to drive to a location, they’re very likely to be fit for nothing by the time they get there. You offering to drive them will take away a lot of stress, and it means they will get safely home if they become more ill while they’re out. If driving isn’t an option, suggest seeing your friend at a place close to their home so they have minimal traveling.

Only plan one activity when seeing your friend with ME. Planning a day long itinerary of crazy golf and day drinking might sound fun to you, but your friend is likely to crash just thinking about it. Also be careful about what type of thing you do. Most people with ME can’t tolerate alcohol, and physical exertion causes the dreaded post-exertional malaise, so going clubbing is out of the question. Try to find places where your friend can stop and rest if they need to, and bear in mind that they may be sensitive to lights, noise and crowds.

If your friend has to leave early or cancel, assure them that this is OK – and mean it! They aren’t doing this because they don’t want to spend time with you, but because they physically can’t. Losing friends is very common for people with ME. People often assume that your lack of socializing is because you’re lazy, or because you don’t want to, or because you’re being rude. In fact, it’s just because you’re too exhausted, but people don’t always understand that. Try not to get frustrated when your friend leaves early or cancels plans. Offer another solution if you can. Be prepared to change your plans for a day in front of the TV (bring snacks). Most importantly, don’t stop asking your friend if they want to hang out, no matter how many times they say no or cancel.

4. Be understanding

This is super important. Your friend’s world has been completely turned upside down by their chronic illness, and this may mean they behave differently. They may need to cancel plans. They may only be able to see you for short periods of time. Their house might be a mess and they could have been wearing the same pajamas for a week. Under all this, they’re still your friend and they probably need your support more than ever. If they are letting you see them on bad days, they trust you not to judge their messy house and greasy hair. It took a long time for me to allow people to see me as anything other than “normal.” I pushed my body to carry on as I had before I was ill, which did nothing but make me worse. I ended up completely bedbound because I was too proud to accept that I couldn’t live how I used to. It takes a lot for your friend to show you them at their most vulnerable, and a bit of understanding and kindness goes a long way.

It’s very common for people to get frustrated with their friend and their chronic illness. They get tired of hearing that you’re not feeling better; that you can’t do the things you used to. So this is probably the best thing you can do for your friend: don’t get angry at them. Their illness is beyond their control, and believe me, they are far more angry with themselves than you are. Losing your normal life and your independence is so hard, and losing your friends on top of that makes it worse.

Your friend needs you to understand that they are unlikely to fully recover and that what you see now is their normal, even if it isn’t yours, and for you to not be resentful of them because of it. A more helpful thing to do is to recognize your friend’s limits and the signs that show they are reaching those limits, which will mean you can be aware of when they need help and when they need rest.

5. And finally… ask

The best thing you can do to support your friend is to ask what support they need. It sounds so obvious, but it’s something people don’t think to do. It can be really hard to ask for help, especially when you’re worried that your friends will be annoyed at you for not being able to do things yourself. It’s also hard to ask for help with things that you think you should be able to do yourself. A simple text to ask if your friend is OK and if they need anything can mean the world to them, or asking if they need help if you can see them struggling. Don’t be surprised if they say no. Even after three years, I still find it hard to accept help sometimes, but knowing that there are people around me who are willing to lend a hand is a huge comfort.

If your friend does say no, don’t push help onto them or force the issue. We can be fiercely protective of our independence, so forcing help onto us will probably just make us annoyed. However, offering help means your friends knows that you’re there for them, and they may accept that help in the future so don’t withdraw the offer because they refused it in the past. It’s very important for us to know that we have supportive people around us, even if we’re too proud or stubborn to accept that support sometimes.

As I said at the beginning, these are things that I have found to be helpful and they may not apply to everyone, and the best thing you can do for your friend is find out exactly what it is they need. As you’re reading this, I assume it’s because you care for your friend and want to make their life a bit easier, so I will say a big thank you on behalf of all of us!

Getty photo by flukyfluky

Originally published: January 5, 2019
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