Friday, 2 October 2015

Things to say to people with chronic illnesses, and how it it will make them feel

A few months ago I shared a blog post on what not to say to people with chronic illnesses so it seems only fair to follow that up with things you should say.

I know I don’t understand

Showing that you know you don't understand is often the best thing to do. Unless you have suffered from a chronic illness yourself, or maybe lived with someone who does. You probably don't get it, and that's fine as long as you know that you don't get it. Honesty is so important, a good friend of a chronic illness sufferer leaves space for the "unknown" and just works with what they have. You don't heave to know what it's like to be a good friend, you jut have to be there for them.

Is there anything you would like me to read, so that I know more about your condition?

This shows willingness to invest time into learning more about a person's condition, which is not only caring but also really practical. It is likely that the person with the illness does not want to spend a lengthy time discussing the ins and outs of their affliction, or they may not feel equipped to talk abut things properly. Often other peoples word's are the best for explaining things, perhaps it's a charity leaflet or another sufferer's blog. It's good to give the sufferer the choice of where you get your information from because there is a lot of dodgy stuff out there! ...people claiming that certain illnesses aren't real or publishing incorrect/out of date information.

Can I help you, is there anything I can do?

It can be difficult for chronically ill people to continually ask for help, especially if they do not feel that anyone is extending a hand. Granted people are not telepathic and so don't know what they can do to help. Asking what you can do (with the intention of following it up) is a good way to bridge the gap. The chronically ill person may not know what they need, or may not need anything from you, but knowing that you are there if they need you is a great reassurance. This subject can be a touchy one for people who are prone to feeling patronised, when it comes to this you have to know your audience and how they are likely to respond as with everything. On the whole though the offer of help is a comfort.

I hope that today is kind to you/I hope that you are as well as possible at the moment

This acknowledges that not all days are good, and that very often better days are filled with symptoms. Chronically ill people don’t get "days off" from being unwell, so never “feel better” or have an “amazing day”. Some people find it upsetting or insensitive when terms like these are banded around. Even if they are used with the best intentions it can remind people of their constant limitations and may make them feel as if they are misunderstood. The phrase 'as well as possible' is often shortened to AWAP online and in writing.

Tell them your news

There may not be much to talk about, and the person who is chronically ill may not have much going on in their life. By telling them your news, it is a way of showing an interest in them, and giving them an opportunity to give you any news they may have in return. Leading with an open question like, “how are you?” or “what’s new with you” can be difficult because they may not know what to say, if they don’t have any news (god or otherwise) or if their symptoms are just the same (and as miserable) as last time. Sharing news is a normal part of friendship, often people feel the need to withhold information if they have been up to something exciting, and know that they have done things that the chronically ill person cannot do. Overtime this is unhealthy as it leads to a lack a of communication, which can ultimately lead to the breakdown of the friendship. Sometimes the best way to be there for someone long term is to talk about yourself every now and then, because that it what happens in a normal friendship!

Reminiscing in general

This is something that those who are chronically ill do a lot. It is fun to remember the good times that have been had, they keep people going when things are tough, and bring hope for the future. It is especially helpful to reminisce with people who experienced the same thing. This validates the fact that the chronically ill person was there, and of course that it actually happened. When you are ill you former healthy life can seem very far off and it can be difficult to remember what actually happened! Some people which chronic illnesses have poor memory due to meds, brain degeneration or lack of stimulation. It is nice to be gently reminded of old times with the aid of photos or videos. Doing this too much can seem like you are permanently living in the past though, it is important to be forward thinking and live in the moment as well.

You are good at/I like you for your….

It can be easy to fall into the trap of telling people that “things could be worse” this is a blatant cover-up of the bad things. People also often lie about a person’s abilities to try and make them feel better about themselves. Again this is obvious to the person who is chronically ill, they can see what you are trying to do... and it isn't working! Instead focus on the genuine positives there are always some, it will build up the person’s self-esteem and make them feel valued.

Tell them that it is okay if they have to cancel plans or take a long time to reply to you

This shows an understanding of the limitations that the illness places on their life, above all it demonstrates that you accept them for who they are in spite of this. You know that they did not choose illness, this shows that you are going to stick with them even though you don’t have to, because they have to stick with illness even though they don’t want to. You are choosing the person over their illness.

I am very lucky to have some lovely friends around me who inspired this post. When I first got ill 8 years ago I wouldn't have known where to start with this, I wouldn't have even known 5 years ago for that matter! These days most of my friends have M.E. or another disability themselves it’s the way things very often go, we understand each other. We know how to treat each other because we have been treated that way ourselves and learnt the right way to go about things. At university I met some gems of people who knew what to say too, I don’t know how but they did, perhaps they are angels! Very often healthy people who "get it" have someone in their life who has experienced a chronic illness, it’s almost like a secret code that only people who have come across chronic illness understand! So here it is, my ‘spoonie tool kit' my best advice on how to be there for someone who has a chronic illness!

Obviously not everyone will respond the same way to this advise, it is just my opinion. I would be interested to hear if anyone agrees/disagrees with me! Let me know in the comments!

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