08 March, 2021

Shared experiences (again)

 I belong to a Fbk page for TN (Trigeminal Neuralgia) which is an invisible nerve pain condition. I don’t regularly read the posts there, because so many are in chronic and severe pain, and it can be both scary reading about it, wondering if that will happen to me, as well as it can make me feel like a fraud, because my pain has so far been reasonably well managed. Still, the other day I saw someone talking about raising the issue of the condition and of their pain with others. Many of them struggle to get any form of understanding or tolerance of their pain from friends or family members, and so suffer (literally) in silence. Someone said the following:

“I still think it is worth persistently and politely pulling people up, and explaining why, though.”

I agreed wih them. And I guess that’s why I write this blog too. Because, like TN, not having children can be an ongoing source of pain for many members of our No Kidding community, and yet it is invisible, ignored, disenfranchised. When I casually mentioned TN once, a friend said to me (innocently), “but you don’t get that now, do you?” And I had to explain that every day I feel it, I’ve learned to live with it, and that I am lucky that medication has helped me so far. That’s not unlike those of us without children. Every day we live with it, we feel it because we know we don’t have children, our friends and family assume that we are fine now, and so we are ignored.

I guess it’s just another example that there are so many of us in society who feel marginalised, misunderstood, and in pain, for a myriad reasons. There are more people who might understand our situation than we realise. So maybe talking about it, both to spread the word to others and to get support from each other, is all we can do. Which I guess is what I try to do. Calmly (I hope) explaining our No Kidding lives when I can. Writing here and thinking. Walking alongside all of you, and feeling grateful for the fact that you are walking alongside me too.

 

6 comments:

  1. I am so grateful that I can walk alongside you.

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  2. People don't have the attention span for other people's chronic conditions. It's sad how self-involved people can be, to the detriment of their relationships with others who may be in pain.

    I'm glad that you are writing here. Like Klara said, "I am so grateful that I can walk alongside you." <3

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  3. Thank you all for holding my hand and letting me hold yours.

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  4. I love this: "So maybe talking about it, both to spread the word to others and to get support from each other, is all we can do." And this: "Walking alongside all of you, and feeling grateful for the fact that you are walking alongside me too." I am so glad to be walking with you. I'm also glad your pain is decently well managed, but sorry you have to deal with it at all. 💜

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  5. Just because you don't write or talk about it doesn't mean you're not living with it and dealing with it... that goes for both your physical pain and the pain of involuntary childlessness. Which is why we all need to be kind to each other, because we never know what someone is dealing with...! So glad to be walking alongside you on this road less travelled too. <3

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  6. Yours is such an important and gentle (yet clear and compelling) voice for people who have been marginalized for one reason or another. I'm so glad you share it with others.

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