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11 Things Your Sick Friend Wants You to Know Before You Visit

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Dealing with chronic illness is confusing enough for the sick person, and is a constant learning curve, so if you didn’t know these things before, that’s OK. It’s taken us all a lot of time to learn these thing about ourselves anyway.

I know that friends and family worry about misstepping, so to make the situations we all face a lot easier for everyone involved, and to maximize your bonding time, I’ve compiled some tips (with the help of some fellow spoonies) to make things go as smoothly as possible.

It’s not designed to make anyone feel harried or guilty. After all, we want you to visit us, our illnesses make us lonely and we miss you, but… we also want to not feel rubbish afterwards. As always, payback is going to happen, but here are some ways to minimize that as much as possible.

1. Surprises are not for sick people.

Don’t get me wrong: an unexpected email, a letter, even a care package through the post can lighten even the darkest of days, but when talking to my fellow spoonies, the thing that came up again and again was how difficult unannounced visits are. This is for two main reasons.

Firstly, living with a chronic illness takes a ridiculous amount of planning. Most people will see if they’re free for an event, include travel time, and that’s pretty much it. 

For someone with a chronic illness, especially illnesses that specifically target energy reserves, there’s an awful lot more to it.  It’ll take time to rest in order to build enough energy for the event itself, the planning of the event so everything that’s needed directly before, during and after is available, the time it’ll take to recover from that preparation, the travel time, the event itself (both of which will obviously be much more tiring than for a healthy person), and then finally the time it takes to rest after the travel and event in order to regain a normal (for us) amount of energy.

Any social activity takes an awful lot of energy and organization to complete, if something unexpected happens on top of that, or we don’t have time to make these arrangements, it can completely wipe us out. 

Secondly, adapting to unexpected changes is not always someone with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS)’s strong point, and I imagine it’s similar with a lot of illnesses where cognitive problems are an issue.

Think of it like this: most people minds are like traveling on buses; if there’s an unexpected obstacle in the road they’ll just drive round it, or take a different route. For us, it’s more like being on a tram. We have pre-planned a route and laid a track to take us from point A to point B in order to pay the least amount of payback possible. If something gets on the track, it’s a lot more difficult for a tram (and it’s traveller) to change routes. It’s technically possible but it takes time, a lot more effort, (a large winch), and there’s a fair chance you’ll end up paying more for the journey. There are no rail replacement bus services when you’re sick.

Many people won’t feel comfortable asking someone to come back another day if they’re not up to a visit (or have another visitor) if someone turns up in person unannounced, and doing so puts them in a very difficult position of choosing between risking offending a loved one, or taking an awful lot of punishment. 

It’s a deep seated fear for most people with chronic illness that loved ones will decide that they don’t really want to hang around with a boring sick person any more and stop coming to see them. It sounds silly, but there are a truly astonishing amount of horror stories of people dealing with exactly this. It makes the risk of offending people very frightening and it can make it extremely difficult to send people away even if that’s what would be best for the sufferer.

Not everyone requires a lot of time in advance to organize visits, so it doesn’t have to mean everything needs to be planned months in advance (although some will prefer that). Even if you have some spare time on a random day and want to see your friend, then texting and asking them will give them the opportunity to say yes, or no, or suggest a time in the future that means they can make sure they don’t suffer unnecessary payback.

2. Timing

Due to the aforementioned constant planning, it helps us to know how long we can rest before you arrive.

If you’re running late, just send us a quick text with your new ETA (as long as you can do this safely). A lot of us have problems with anxiety, so a text will also stop us thinking you’ve been eaten by bears, swarmed by killer bees, or been hijacked by aforementioned bears and forced to pursue honey at the risk of death by angry killer bees.

3. Cancelations

There is always a chance that they may need to cancel a visit. As much as we want to see you (and we really, really do), our conditions are difficult to control effectively, and can change at any time, so all too often we may need to put you off until we feel more able.

Please never think that we don’t want to spend time with you. Every time I’ve had to cancel or postpone a visit it’s always broken my heart a little bit, and I know others will feel the same, so please trust that we will see you as soon as we feel able to.

4. Please don’t turn up ill.

What would take days or weeks for a fully fit person to deal with could take weeks or months for a someone with a chronic illness to fight off. If you or someone close to you has an illness, even if it’s a cold, please let them know. They may want to postpone the visit until the sickness has passed, or just know in advance to get the anti-bacterial hand wipes and medical grade face masks out.

5. Know your sick person’s sensitivities.

Many people with ME/CFS will have some kind of sensitivity which means one of their senses is heightened. This may sound like a superhero origin story, but it basically means that certain things are more likely to trigger brain fog, exhaustion and even Emergency Shutdowns. Part of our cognitive problems mean that we may struggle to filter information and it’s incredibly easy to get sensory overload, but there’s often one or two types of information that someone will struggle with specifically.

Personally, my main issue is with noise. I use earplugs or industrial ear defenders every single day at one point or another, because my hearing is so acute now. After a certain point the information stops making sense and I feel a bit like I’m going to scream or faint. In terms of visits, things that help include speaking quietly and slowly, trying to have only one person speaking at a time (or understanding if I need to pause if there’s another conversation going on in the room), and not having other noises like the radio or TV on while I’m there.

Trying to keep the conversation relatively calm can also help prolong time with your sickie, because excitement is one of the most tiring emotions, and the most difficult to control. But I’ll be honest; it’s bound to happen sometimes, especially if your friend is something of a Tigger like me, so don’t feel bad if it does. It’s important that they have fun anyway if it’s not necessarily going to harm them — it’s just going to tire them out a bit more quickly.

6. Time Limits 

As with cancelations, it’s likely they might need to set a time limit to your visit to make sure they don’t overdo it, or even cut it short if they reach their limit quicker than they were expecting. It’s definitely not because they don’t want you to stay longer, or that they’ve suddenly got bored. It’s more likely that they’ve become so excited about your visit they’ve worn themselves out before you’ve arrived in anticipation!

I find it’s actually harder not setting time limits because it means that I’m more likely to push myself because I don’t want my friends to leave.  If I can say, “It’s a 20 minute day today” at the beginning of the visit then I’m more likely to stick to the limit I’ve set myself and not push it too far. 

7. Know warning signals.

Because it’s torturously difficult to stick to time limits when spending time with your friends, and it feels incredibly rude to suddenly ask people to leave because you’re tired, a lot of people will push it too far rather than say anything.

It’s useful to keep an eye out for the warning signals of their illness so you can see when they’re tiring, and ask if they’ve had enough. This will differ from person to person but there are some fairly good  indicators, namely:

Blanking: if your friend starts to lose track of the conversation, to repeat themselves, to have trouble focussing or finding words, or just stops talking for a while, then it can be a sign that their brain is starting to find information harder to process and they’re starting to tire. This is the most likely and easiest to spot.

Avoiding eye contact: some people will also avoid eye contact or shut their eyes when they tire in an attempt to minimize the stimulus their brain is receiving.

Posture Changes: if your friend starts to slump or wants to lie down it’s a good indicator they’re tiring.

Yawning: it seems an obvious one, but it’s worth mentioning.

If you notice these symptoms, it probably best to check with them if they’ve had enough. They may say they’re all right and want to continue, and that’s fine, they know best, but it’s generally best to check.

In any case, try to remember that they are still sick, and if they indicate in any way that they’re tiring, to take it seriously.

8. Enough Is Enough

Once someone starts to flag it’s extremely unlikely they’ll be up to more social contact that day. It can happen occasionally, but unless your friend outright says, “I’ll see you in x amount of time after a rest”, it’s best to assume they can’t manage more.

Again, it’s not that they don’t want to spend the time with you, it’s that they physically can’t without causing themselves damage.

9. Standards may be different.

Not everyone has access to the care they really need, or a family that’s able to look after them, so things like housework or getting food in for a visit may have to take a back seat. Sometimes it can literally be a case of choosing between tidying a room or having someone over for a visit. It’s very likely they are aware of this, and is embarrassed about it, so it’s best not to bring it up.

If you’re worried that your friend isn’t getting the help they need, or feel they could do with a hand cleaning, it’s perfectly OK to ask if there’s anything they need help with. They may not take you up on it right then and there (having people tidy around you is really tiring, so they might need to schedule another time), or at all, but they will appreciate the thought.

Similarly you could offer to make the drinks or food, bring food around with you, or check if there’s anything they need before leaving.

10. If in doubt, ask your friend.

The person who knows most about your friend’s condition, is your friend. If you’re worried about misstepping or not sure what to do, then it’s perfectly fine to ask. 

11. It is absolutely fine if you’ve done these things.

Lastly, there’s every chance you may have done one or all of these things. That’s fine. Really. It’s not like you read up on what would be helpful and then did the exact opposite, just for kicks. Most of the time there is no guide for you to know what’s helpful and what isn’t; that’s why I felt the need to write one. So don’t worry, we still love you.

Follow this journey on Super Pooped: Adventures for the Exhausted.

Originally published: August 15, 2016
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