I have thought long and hard about this one. And this post is not quite the same message that I gave to those nearer and dearer than here (this is public), but I feel that it is a vitally important one for ANYONE who wants to know me, understand me, and walk this road with me in any way small or great!
When I was first diagnosed, after a few days of digesting and talking to family, and starting to process, I decided to be public about it (as in personal friends at that point), as my condition is very hard to hide now that no one ever sees me without crutches or a wheelchair, and it is now impossible to think that this will “get better”. But I wanted to tell them with a strong caveat that I REALLY didn’t want people to say a bunch of stuff that I (and others with chronic or degenerative or terminal illnesses) find REALLY hurtful! … and some people got it, some people thanked me for my honesty, but it also isolated some people, and while I feel sad and disappointed about that, the reality is, that if some people are insensitive enough to want to be able to say whatever they like, regardless of how hurtful it is (even if that is not their intention), then this is going to be a rocky road for our friendship! So I decided that I would rather get it out there now, ahead of time, and have something simple to point to when they do hurt me, rather than sit quietly and say nothing and absorb and accept the painful comments … and risk becoming bitter and angry! … I try very hard to have an equal measure of truth and grace in all things, I am the first to admit that I often get that wrong, but that balance and a full measure of BOTH, is my intention. I am struggling enormously both emotionally and physically, and have been for over two decades, and I am simply not as robust as I look!
I have also hidden that pain for too long and it has cost me more than I will ever be able to explain, so I need to be fully transparent from here on in, including how I get hurt by what people say! I also owe it to all the millions of others who suffer long term, and so by speaking out about what hurts them, which is what also hurts me, is a vital part to me sharing this journey publicly. I want to walk this journey with grace, in love, but also in full truth! I do not have the capacity to absorb “extra” unnecessary pain, and I am doing nobody any favours by silencing the voice of that pain especially as it is a voice that represents more than just me! So on behalf of myself and anyone else who walks a similar journey, I am going to proceed…
For the most part, I do truly believe that most people who know me well enough to see me regularly or have regular contact with me, mean well. I don’t see the worst in people, or assume the worst. So I know that people do not mean to be hurtful, and that their intentions aren’t bad. I also know that some people simply don’t know what to say. That they either “aren’t good with words” or don’t understand what is happening for me, but from what I am experiencing personally over decades of health issues, and now deeply involved in support groups for long term suffering and chronic illnesses, this topic is THE most heated and THE most hurtful to those in these situations.
Having no malice is simply not an excuse to spend one’s life hurting those around us who are already hurting, simply because WE feel uncomfortable! No one is saying that anyone needs to be perfect, or that they should know what TO say every single time and with ease, or that they will get it right every time… but with the amount of suffering in the world, I don’t think that it is too hard to climb outside our comfort zone once in a while and try …
I recently shared this link on what NOT to say to someone with EDS, and I was quite frankly shocked at how polarising the response was. Almost everyone was positive, (some a bit shocked) but most found it challenging and helpful. I am not sure that it was a great place to start in sharing the pain of flippant or dismissive responses, but after getting so many of them that week and feeling so broken by them, and seeing this link posted on all the EDS support groups etc, I grabbed it and ran with it… I was fighting to be heard, and frightened of opening messages for fear of another flippant remark … and I saw this life raft and grabbed it! I knew that the response wouldn’t all be cheery, but have bee shocked that a small handful of people had the complete opposite reaction and it has REALLY saddened me, not just that they were hurt by it, or that they pulled away from me because of it, but by the way that they did it and the cruel things that they have said. I guess that that is just part of the journey and I guess I will lose some people along the way, but I can’t MAKE anyone stay who doesn’t want to I guess 😦
Article by Lecretia’s husband on why “helpful advice” on what to do is not helpful and in fact puts us in a very difficult position: http://www.lecretia.org/the-kindness-of-strangers
News article on Empathy Cards: www.nbcnews.com/nightly-news/cards-n359786