Before I start I'll point out that I'm writing this from the perspective of someone who has been unwell, rather than from that of a nurse. I could easily do both but I don't talk about my job here (and before you say it, yes I know that seems odd given the title of the blog but in the immortal words of Cher from Clueless: Whatever).
This is for anyone out there who knows someone or has any (no matter how fleeting) contact with someone who has a chronic illness. A brief guide, or a "how to" if you will.
I'm basing all of this on my own experiences and from others in similar circumstances that I've spoken to. Although I know people mean well, it can often be hard to know what to say in certain situations, particularly when someone is very unwell and so I hope this will be useful and will be taken in the spirit it is intended.
1) Try to understand when someone with a chronic illness cancels at the last minute. I know it's really frustrating and it messes up your plans but stop and think why they can't make it. I hate cancelling anything, it leaves me wracked with guilt and worry about how the other person must feel, something that is magnified if it appears they are annoyed at being let down. The last thing a sick person needs is to feel worse, am I right?! So go easy, take a deep breath and say "no worries, hope everything's OK".
2) That brings me nicely onto my next point. Text messages, emails and cards are all greatly appreciated when you're unwell. It's positively heart warming to know people are thinking of you and wishing you well and it's a lovely thing to do for someone. Another thing that's nice is to just text someone and say "I'm sorry to hear you're unwell, if there's anything I can do to help please let me know. There's no need to answer this, just wanted you to know I'm thinking of you". That right there says everything you need. I can't tell you how grateful I was to receive messages like that because it let me know the person cared but also that I was under no obligation to try and get the strength together to send back an explanatory text about how I was feeling (surprisingly difficult when you have no energy).
3) Try to respect a person's privacy and dignity. Personally, I don't have a huge problem with people asking me general questions about when I was sick, nor do I have an issue with talking about it. The difficulty for me arises when I'm asked extremely personal questions; I won't go into detail but a good rule of thumb is to stop and think before you ask if you'd be uncomfortable being asked the same question or is it appropriate given the surroundings/circumstances.
4) It's very well meant when people say "but you don't look ill at all..you look grand!". I know that's meant as a compliment but several people I've spoken to have said that they bridled when they heard this said to them when very unwell. Almost as if you now feel like you have to prove you are in fact ill or even worse, that you wished you were as well as you looked and not suffering on the inside. Being reminded of that isn't always helpful. On the flip side of that, telling someone they look brutal is also a bad idea. I know, you can't win, eh? Except maybe just to say "you look great" and leave it at that.
5) As valid as I think other people's faith is, I don't think it's ever appropriate to express to someone that "If you trust in God, you will get better" etc. You don't know anyones stance on religion, some people balk at it completely and being told that with the help of what you consider to be an imaginary deity, everything will be fine, could be quite frustrating. Lighting candles or praying for someone on the other hand, is a great idea. The difference being that you are sending out positive thoughts for that person and again, it's comforting to know you're in that person's thoughts..somehow it seems a bit more tangible. I'm all for an old prayer and a candle, so I am.
6) Advising someone who is unwell about what they should and shouldn't do as a "sick person" is incredibly annoying to be honest. Guaranteed, the person you're saying it to will know much more about their own condition and what they're capable of than you do, so again, maybe just think it through before saying it.
7) I can't count the amount of times someone said to me how lucky I was to be on sick leave and not have to go to work. For me, this was a real kick in the teeth (although again, I know it's just an attempt to look on the bright side), I love my job and found being stuck at home ill really very upsetting and at times, soul destroying. Basically, if someone is off work voluntarily (on sabbatical etc) and is happy about it then sure, work away and say the above. Being on sick leave on the other hand really is not a positive, so tread carefully.
6) Advising someone who is unwell about what they should and shouldn't do as a "sick person" is incredibly annoying to be honest. Guaranteed, the person you're saying it to will know much more about their own condition and what they're capable of than you do, so again, maybe just think it through before saying it.
7) I can't count the amount of times someone said to me how lucky I was to be on sick leave and not have to go to work. For me, this was a real kick in the teeth (although again, I know it's just an attempt to look on the bright side), I love my job and found being stuck at home ill really very upsetting and at times, soul destroying. Basically, if someone is off work voluntarily (on sabbatical etc) and is happy about it then sure, work away and say the above. Being on sick leave on the other hand really is not a positive, so tread carefully.
8) And lastly, although I know I said I wouldn't go back to my nursing knowledge here, I would like to just touch on one very important point that I think is relevant to everyone. In college we are taught all about Holism (I'm giving it a capital H to emphasise the importance) which basically means that you treat the individual as a "whole" person, i.e not just physically but emotionally, mentally, spiritually and socially. You do not just view them as their illness, they are not just the sum of their parts, if you will. I think this is vital to be honest. People who have a chronic illness are weary of being ill, they're tired of being associated with that illness and would like to be considered as themselves rather than "diabetes" or "cancer" or "cardiac disease" or whatever. How you can apply this in real life if you're not a health care professional, is to talk about things other than how that person is feeling, you should of course ask and I'm sure that would be appreciated but there's no need to dwell on the minutiae of someones health. Believe me, sometimes you just get sick of talking about it and would like to be asked about the latest book you read instead. I generally found this only ever happened to me with people that I didn't know particularly well, at social functions etc. I understand that people are stuck for things to say and often it's felt that it shows interest to ask people personal questions about their lives. That's completely fair enough but again, from experience, if I'm at a social event, I really do not want to be discussing surgery that I had to have. You can take it as a given that it isn't a pleasant topic of conversation for anyone, unless of course the person you're talking to was the surgeon involved and they did a particularly spiffy job, in which case; high five!
That's all I can think of right now and if you stuck with me to the end, then I appreciate it. I hope this was in some way helpful and I'd just like to reiterate, that concern for another human being is always appreciated, I just wanted to share a few tips I've picked up along the way. We're all guilty of not getting things perfectly right all the time and that's OK too but I suppose being mindful of the mental strain that having a chronic illness can leave a person with is important and trying not to add to that is just common sense.
Please let me know in the comments if there's anything you'd like to add to this list!
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