The Long Term Impact of the Words we Choose!

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.ย 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 ย 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 ๐Ÿ˜ฆ

http://www.buzzfeed.com/zebrazebrazebra/16-things-healthy-people-say-to-edsers-v5ff#.utyeGGRJ76

This isn’t a set of rules. My truth is that there are no rules on how to behave, but over and over I have experienced from very well intentioned people, an incredible amount of added pain to my journey, and I have read and heard it over and over and over again, as experienced by others who travel a similar journey. I have read the blogs and the news of the Empathy Cards made [see below links] out of this exact need that soooo many suffering people have, and lists like the one above are only made because there is a need. Those kinds of comments make aย really tough journey even worse. We have a choice I believe, to speak out and express that pain so that people can see the damage that it causes so that they can be more empathetic, (or not, then it is their choice not to, and to walk away), or we can suffer in silence. Too many people become house bound and friendless because they donโ€™t speak up but at the same time canโ€™t bear the pain of well intentioned people being flippant. I have had an amazing response from speaking out, the letters from fellow sufferers, often strangers, has made me cry. I am hoping that they will allow me to share some of their heart breaking stories…
I can only speak my truth and each and every person who I know, needs to decide for themselves what they do with it. I have spent a lifetime carrying others, not everyone and not always, but it is my downfall. I no longer have the strength to do that, and havenโ€™t for a very long time and was functioning and carrying them on borrowed energy that I can never pay back. I need to be real, … and I am going to survive this with support and love and honesty and I know that not everyone can do that, or can do that with me specifically, even if they can do it with others, and I have to be OK with that. I need to be honest and truthful but with an equal measure of grace. But I wonโ€™t always succeed. Sometimes it is just so hurtful, sometimes it is so unfair, sometimes I just donโ€™t have the emotional energy to look past the pain and be as gracious as I would like, and other times I am simply too tired and too hurt to be gracious at all, and all that I have is the anger and frustration.
I get that people donโ€™t like to deal with people who are suffering, and find it a challenge to sit in other people’s journeys, to stay where everย Iย am, and to face uncomfortable feelings, and not know what to say, and that they get frustrated with other people’s journeys that donโ€™t feel fast enough for our own comfort, โ€ฆ and I donโ€™t blame them and nor do I judge them for feeling that way or accuse them of bad intentions. But it isnโ€™t my job to suck it up just so that they might feel better. Yes I can to the stranger who doesnโ€™t know me and stares or asks hurtful questions or makes rude comments, and in fact I think that I have much to selflessly give in smiling at the stranger, or letting the child ask questions and touch my crutches so that they are not afraid of them and can learn a valuable lesson to understand that people with aids are still relatively โ€œnormalโ€ people. But if anyone wants to journey with me long term, to go the long haul, and be there to the end, then they are welcome. There are NO rules, and they will make nearly as many mistakes as I do, and we will blunder along. But if they expect to be able to make the same hurtful mistakes over and over and over and need me to cover for them over endlessly so that THEY feel more comfortable, then the friendship is not safe for me, they are not actually journeying WITH me, and it will fall by the way side. Not everything is rules and/or punishment, sometimes it is natural consequences and we all have choices to make.
I am choosing to do this with as much dignity and grace as I can muster (and more, through Godโ€™s grace not my own), but also with as much truth as I am able to share (and again with Godโ€™s truth and grace). What people choose to do with that is up to them.

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

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2 thoughts on “The Long Term Impact of the Words we Choose!

  1. Could you give some examples of hurtful things people have said? I have one that makes me cringe every time I think about it: a coworker recently (over a month ago) advised me that I needed to pray for healing and God would take away my pain. I responded to her that I pray everyday but I don’t believe that prayer is going to heal me. She shot back with “then you don’t believe enough and you are weak in your faith”. I said she shot back but I should have said she punched back, I was so stunned and did not know what to say so I simply walked away. So when is it okay to tell someone who is hurting that it is their fault because they lack faith? I have thought many times about letting her know how hurtful that conversation was, but I believe I would be wasting my time. Her intention may have been to make me feel better but she succeeded in reaffirming my lack of faith in people. My faith in God has me praying for her, Father, forgive them, for they know not what they do.

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    1. Thanks Jackie for sharing your personal example, and I am so glad to hear that you are being loving towards her rather than judging her. I do believe that they don’t hurt us on purpose, but the reality is that it DOES hurt and we need to be able to work through that or walk away, both in love, but not stay and suck it up all the time to make them feel better!

      Sadly I have heard so many just like that and yesterday received a private email (they didn’t want to share it on here) from someone giving me a very similar example and how it crushed them and that they are struggling to get over it. I don’t think that people realise the affect that it has, mainly because we are struggling already ourselves, and secondly because we hear these comments so often that they start to sound like maybe they are true… I had a friend who had a baby born with only one arm, and quite a few people told her that if she prayed hard enough, or had enough faith, the baby would be “healed” (yes, grow an arm!). People genuinely mean well, but the effect is that it implies that her (or your, or my) faith is not strong enough, which is judgemental and hurtful and can be crushing! It’s not Biblical to judge, it is Biblical to uplift and encourage, not burden with untruths!

      But I don’t think that these only just happen from people with a warped sense of God, I think that there are many other kinds of comments too, from all kinds of people! My earlier post for example on the comment on how ugly my “Crocs” were that I was wearing to protect my super damaged toes, is also something that has had long term consequences. I had totally moved on and forgotten about what she said all those years ago, but as my aids have recently got more and more obvious to outsiders, those comments have been haunting me and skewing my vision of how people see me. Even if people say nice things to me now, my brain still says “yes but what do they REALLY think?” and I have to be super purposeful about blocking out those kinds of thoughts, even though I know that the reality is, with the way people stare, and other comments made, some people DO judge me for what I look like, and it IS hurtful! I mustn’t dwell there, but the less people who say those things the easier and kinder it is on me. Does that make sense?

      Another example is that people say things out of their own pain some times. I read a book a while ago called something like “get out of that pit” and I found it soooo helpful! It was all about how some people like to sit in their pit and wallow and that their “bad luck” in life actually becomes their identity and they sit in it and want others to come and sit in it with them. This is obviously not everyone, and in fact most people don’t do this, but sometimes it is not that easy to notice that some people are pit dwellers and we don’t mind indulging them by sitting in their pits with them now and then because we feel that we are being sacrificial and loving to them if we do. But then something happens to US and when we are in need, and our situation challenges the relationship because they panic because our job is to sit in their pit with them, and not have our own problems. So they say things (again not on purpose) to remind us how bad their life is and that ours in not nearly as bad as theirs, and so they minimise our pain and focus on their own and make comments that reflect that, but the underlying message is “don’t forget MY pain! Your pain isn’t THAT bad, but mine is, so get back here into MY pit and sit with me and wallow with ME!!!” … and that has an impact because we then feel guilty about not doing what they want and it can be a huge struggle long term, unless we are able to see it for what it is and not allow ourselves to be drawn in… We don’t want to sit in a pit and wallow ourselves (even though we have our moments when it is almost healthy to wallow for a moment, we shouldn’t DWELL in a pit), and neither should they!

      I thought of a bunch of good examples to write for you in response to your comment in the middle of the night, but with the light of day and waking up too early with terrible shoulder pain, I have woken up with worse than usual brain fog and not enough spoons so I am drawing a blank … but I will try and remember to add some later ๐Ÿ™‚ that or walk away, both in love, but not stay and suck it up all the time to make them feel better!

      Sadly I have heard so many just like that and yesterday received a private email (they didn’t want to share it on here) from someone giving me a very similar example and how it crushed them and that they are struggling to get over it. I don’t think that people realise the affect that it has, mainly because we are struggling already ourselves, and secondly because we hear these comments so often that they start to sound like maybe they are true… I had a friend who had a baby born with only one arm, and quite a few people told her that if she prayed hard enough, or had enough faith, the baby would be “healed” (yes, grow an arm!). People genuinely mean well, but the effect is that it implies that her (or your, or my) faith is not strong enough, which is judgemental and hurtful and can be crushing! It’s not Biblical to judge, it is Biblical to uplift and encourage, not burden with untruths!

      But I don’t think that these only just happen from people with a warped sense of God, I think that there are many other kinds of comments too, from all kinds of people! My earlier post for example on the comment on how ugly my “Crocs” were that I was wearing to protect my super damaged toes, is also something that has had long term consequences. I had totally moved on and forgotten about what she said all those years ago, but as my aids have recently got more and more obvious to outsiders, those comments have been haunting me and skewing my vision of how people see me. Even if people say nice things to me now, my brain still says “yes but what do they REALLY think?” and I have to be super purposeful about blocking out those kinds of thoughts, even though I know that the reality is, with the way people stare, and other comments made, some people DO judge me for what I look like, and it IS hurtful! I mustn’t dwell there, but the less people who say those things the easier and kinder it is on me. Does that make sense?

      Another example is that people say things out of their own pain some times. I read a book a while ago called something like “get out of that pit” and I found it soooo helpful! It was all about how some people like to sit in their pit and wallow and that their “bad luck” in life actually becomes their identity and they sit in it and want others to come and sit in it with them. This is obviously not everyone, and in fact most people don’t do this, but sometimes it is not that easy to notice that some people are pit dwellers and we don’t mind indulging them by sitting in their pits with them now and then because we feel that we are being sacrificial and loving to them if we do. But then something happens to US and when we are in need, and our situation challenges the relationship because they panic because our job is to sit in their pit with them, and not have our own problems. So they say things (again not on purpose) to remind us how bad their life is and that ours in not nearly as bad as theirs, and so they minimise our pain and focus on their own and make comments that reflect that, but the underlying message is “don’t forget MY pain! Your pain isn’t THAT bad, but mine is, so get back here into MY pit and sit with me and wallow with ME!!!” … and that has an impact because we then feel guilty about not doing what they want and it can be a huge struggle long term, unless we are able to see it for what it is and not allow ourselves to be drawn in… We don’t want to sit in a pit and wallow ourselves (even though we have our moments when it is almost healthy to wallow for a moment, we shouldn’t DWELL in a pit), and neither should they!

      I thought of a bunch of good examples to write for you in response to your comment in the middle of the night, but with the light of day and waking up too early with terrible shoulder pain, I have woken up with worse than usual brain fog and not enough spoons so I am drawing a blank … but I will try and remember to add some later ๐Ÿ™‚

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