If you’ve been following my Instagram account – @endobunny – then you have probably noticed that I am participating in the Chronic Pain Awareness Challenge. As I’ve mentioned previously, September is Chronic Pain Awareness month, and one of my fellow chronic illness friends created a month-long challenge for anyone to take part in.
Today, just happens to be day 24, which has the challenge “what tips would you give to someone trying to understand your suffering?”. And it’s perfect, because over the last couple of weeks I’ve struggled to get people to understand me, and I had a similar topic to write about on my list.
Throughout my journey with chronic illness, I have come to the conclusion that people will only hear what they want to hear, meaning they will only understand what they want. Perhaps it is what they think is most important or relevant to them, or perhaps it is just simple ignorance. It’s a bit like that saying “you can lead a horse to water but you can’t make it drink” – and you really can’t.
Unfortunately for me, I have found that it is those that work in the healthcare profession that are least likely to understand, which seems ironic seeing as they must have at least some awareness of our conditions. However, my experiences this year have enabled me to take on the mindset that I can no longer be bothered trying to force my conditions and symptoms onto people who don’t want to understand – I’d rather save my efforts for those who genuinely care.
So here are my top tips for those of you doing the understanding;
- Firstly, if I want to tell you about my health conditions, understand that it has taken a lot for me to think of you as a trusted person. It takes courage and bravery to be able to share my story, as it’s so personal to me, so simply respect that
- If you’d rather not hear my story, then don’t bother asking me about it in the first place. There is nothing worse than having that small glimmer of hope that someone wants to try and understand, only to have it diminished before it even began
- If you can’t understand the language or medical terms I am using, just ask me. I am happier to make it simplier
- If you have any questions, make sure they are appropriate – both in content and location. Do you really think I’m going to tell you about my periods or sex life in a staff kitchen or in the middle of the shop?
- I will not be afraid to repeat myself to you if I have to. If it takes multiple times for something to sink in for you, then I’m prepared to do that
- Don’t be surprised if I appear agitated when you’re either digging too deep or not even trying to understand
- Even if you only have a small amount of understanding about my conditions, then you can still show interest and ask how I am.
- Don’t tell me how “sorry you are” for me – it’s awkward
- Make sure your responses to my illnesses are appropriate – don’t even think about asking me “when I’m going to get better” etc etc!
And here are my top tips if you’re doing the talking;
- If you’re finding yourself getting emotional whilst you are talking to someone – medical or not – don’t be afraid to let it out, as it just shows that person how real and life-altering this is for you
- Only ever give as much information and detail as you are comfortable with, especially if you’re willing to explain or inform people you are not that close to
- On the other hand, if it’s your GP or consultant, it might be worth giving them as much detail as possible to enable them to fully understand your current problems
- Try and put things into simpler terms if the understanding is proving tricky
- Provide people with information leaflets or point them in the right direction of websites so they can look things up for themselves
- Don’t be scared of telling people that they simply just don’t understand – it might just change their perception or mindset to enable them to understand it more.
- If the GP or consultant is the one not understanding, you can ask to be seen by someone else
And the end of the day, there will always be a handful of people who are not that great in the understanding department, but there will also be a large number of people who do, and go above and beyond to understand. So don’t let the small number of those who don’t or can’t be bothered to upset you.