5 Tips for Friends of Chronically Ill Folk
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| Out & About, Copyright: C King |
But it struck me that despite these photos having been taken on the previous day, there might be those on my feed that might wonder how I might seem fine one minute and not the next and, indeed, why I posted these pictures at all. How might someone understand without having it spelt out? Is this the barrier to their understanding? So I thought I would produce a sort of 'chronically ill friend etiquette guide' to perhaps dispel some myths and help non-chronically ill friends better understand.
1. Chronic conditions fluctuate
Not long ago, I overheard a couple talk about someone they viewed as not being genuinely ill, in a way that I am sure they wouldn't dream of doing in person. Even recently, a family member questioned why I can go out, but not fit lots of things into the day. The truth is that I'm not fine, but I have become very expert at disguising it. I'm not alone. The words "I'm fine" are almost an in-joke amongst those within the chronic illness community.
Why do we say "I'm fine"? Well, I do it for you, so you don't judge me/ worry about me. I do it for me, so you still see me as my smart, capable self (which, for the avoidance of doubt, I still am), and so that I keep focused on living life to the best of my ability. Also, the explanation itself is, at times, too cumbersome, and may be we are not up to explaining it that day. Even if we were, we can't gauge whether or not you can handle the unfiltered version.
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In the middle of a fall that
evening
Copyright: C King
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By all means, take "I'm fine" with a packet of salt, but do believe me that my condition fluctuates. Overall, I manage my symptoms very well and yes, there are some that are trickier to control, which means that there are really fabulous days when I get to do as I please, and others where I will sit in my PJ's and watch boxsets all day. Please don't judge me for either type of day, and simply trust that this is the way it is for me.
2. We celebrate the small stuff
Just like for most parents, ninety per cent of the pictures and videos I take are of my child. But as someone with a chronic condition, this holds special significance. I celebrate when I do something I deem positive, because I am purposefully under the radar for the rest of the time. Posting pictures is not about attention-seeking. For some of the time, my MS places me under a kind of house arrest (quite difficult for an extrovert like me). So, when I am happy, or celebrate a small success (possibly at odds with your definition of this), or put on my make-up, or have fun with my child, I am making a memory. I am celebrating, because on that day I am back to being me, and I want to share that with you. (Also, why can't disabled or chronically ill people have fun like anyone else?)
How can you help as a friend?
Support. That's it. Don't question it, just be happy for us. Be as proud of our achievements as we are.
3. We never cancel willingly
Sometimes, we chronically ill folk have to cancel and, on occasion, this will be last minute. You will never know how difficult it is to text or call you to cancel. I will do everything I can to make that time. To you, it's a massive inconvenience, and you're probably questioning my commitment. To me, I worry that you will think ill of me, and I feel like I have failed.
Having a fluctuating condition is totally different to waking up with a bad cold, and putting up the 'don't disturb' sign that day. That's a known quantity. With chronic illness, depending on the timing and voracity of symptoms, you may not know how you will feel until closer to the time.
How can you help as a friend?
4. Don't give up on us
Being around someone with a disability or a chronic condition doesn't mean you have to treat us us too differently. Friends trust each other, are kind to each other, and can see below the surface. No need to be afraid of our condition. Yes, it's part of us, but we'll always be the fabulous people you know and love.
Of course, if your friend is a wheelchair user (and you want to see them), then you probably don't want to be using a venue without an accessible toilet or to hold the event up a flight of stairs with no lift access. For those of us able-bodied, but hampered in some way by our condition, we might need what I call a 'friend adaption'. If you're not quite sure what this in our individual situation, I find most are very willing to talk about what they need.
How can you help as a friend?
What can a 'friend adaption' look like? Don't worry, it's not really anything but to think of your friend's situation. For example, if they can't travel very far, then offer to go to them, or to drive them somewhere. If fatigue is triggered in the afternoon, then ask them what time suits. The best thing you can do is to be led by your friend. It's really not that hard work.
Don't shy away. By all means, 'like' a ranty tweet or a funny meme, but it's also okay to want to engage with me when I talk about my condition on social media, and to 'like' that too. No question is silly; no previous knowledge is required. Let's both learn from each other.
5. My condition is unique, like a snowflake
A health condition can be very individual in its presentation.
Even if we share the same condition, say, with someone you know, we are very likely not to experience symptoms in the same way and our individual paths will be different. As with most things disability or chronic illness-related, there is a spectrum and this doesn't depend on things like the length of the journey, our fitness, heredity, mindset or age.
I have seen others in the Community become upset at being told to 'get better soon.' The reality is that those with chronic conditions are not going to get better. What does get better is our ability to manage our symptoms. Personally, I don't mind someone wishing me to get better, because I believe it comes from a thoughtful place, and I'm all for that!
How can you help as a friend?
Learn more about how our condition affects us. Your knowledge is limited only to the experience of the person you know with the condition, or what you know from the media. It's likely not the reality of your friend.
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| Copyright: C King |
6. Shit just happens.
Okay, I'm adding an extra tip! Sometimes things just happen and nothing will have triggered it. And it's not my fault because I didn't eat something, exercise in a certain way, have a more positive mindset, try harder. No amount of dieting, pills, kale (!), wishing, prayer, will power, positive thinking, frankly, anything, will account for why some symptoms or relapses happen. There are no triggers. They just do. I can't always control it.
How can you help as a friend?
Friends, I love you, but please stop sending me a cure for MS. There is no cure. Please also don't tell me that I have to be more [insert advice], or give me advice if you are not in my situation. If there isn't an explanation for symptoms, it would be more helpful to be there for me than to worry about what set anything off.
I have to say that with the exception of the one or two who don't understand, my friends have generally been very empathetic. May be that's because they care to be, are just very understanding people (I pick well), or perhaps I'm just more blatant about how I feel (one of my goals for this year).
If you're a friend of a chronically ill person, I truly hope this has given you a better insight into our situation. The important thing is: let's just keep talking!
#ChronicIllness #Disability #MS #Friendship #Support #Community
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