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Limited mobility | Unlimited stories: Learning to share the pain

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I don't know what it is about pain but it can take over all your thoughts and feelings and reason. Although I feel deeply, I also am very level-headed and very emotionally stable. I never got into dark emotional places until I got the pains I've had for the past three years. I sometimes hear myself thinking and am shocked that these thoughts even exist in my head. But they do. And they disappear once the pain leaves the body.

Yesterday I was cooking all day with one of my dearest friends, and as always finding a very pleasant balance between making stuff with our hands while updating each other about our lives.

Her partner has a chronic illness that goes with intense physical pains and she shared her worries about him - at times he had so much pain he couldn't even think for long enough to realize that maybe, just maybe, the most basic thing to do was take painkillers. So he would only come home after a colleague had said to him 'I can see in your eyes you're in pain, go home now'. And then his girlfriend would have to say 'you have to take your painkillers, why didn't you take painkillers if you're in pain all day'.

He would have no answer to that question.

We were thinking out loud about ways to get him more into his body, and out of his mind at times like these. I was agreeing loudly with her about how he should ask for help, how he should let her in, how it would be better for him to talk more about the pain so at least it was a shared experience. Because sometimes when he actually did share she actually would have an idea that he later admitted had helped him feel more comfortable, or, also important, less alone in his experience. Also, for 'the outsider', which is the partner and often caretaker, it is incredibly hard to want to help but have no way of knowing how to do it.

So how would it be possible to create a better balance for him and them together when he had one of his severe pain attacks?

At some point I noticed I got more silent. Wanting to say more but not finding the words. We have these conversations often, and I always feel for both of them so deeply. I feel for her pain, for her struggle to find ways to help, for her pain because she sees him, getting worse each year. It's a lot to carry. I also feel for him. For his pain. For his struggle to maybe not focus too much on it by talking about it. For wanting to just survive they days and get on with the better things in life. For finding ways to cope and for trying so hard to let her in, because when looking back over the years, he does get better at the sharing part.

"I always have such mixed feelings when we're talking about this", I finally heard myself saying

Suddenly I had realized I was always so involved in these conversations, and so empathetic with both sides of the story, while not realizing I was like him. Me, too, was struggling with sharing, asking for help, getting swallowed by so much pain I wasn't able to ask for help or even do stuff that would help me in these situations.

And me being sooo 1:1 with 'his situation' also meant that every time I would feel empathetic with her side of the story I was actually listening to thoughts that were similar to my boyfriends'. Who also, very much, as he said time and time again, would love to hear more about my experience, would love it if I opened up more, asked for help more...

Let him in more.

Because maybe, just maybe, he would be able to do this tiny thing that of course would not take the pain away, but would make a part of the experience better, lighter, in either the emotional, the physical, or the practical way.

I can't believe I didn't articulate this 'insight' earlier. But this morning when I couldn't get from my bed to the couch downstairs (read about my recovery days here) I just texted that fact to him. Half an hour later I had finally reached the couch, and texted him again. Another 1,5 hour later I had managed to somehow make coffee and grab some yoghurt and fruit so I could finally have breakfast. I texted him again.

Normally we only exchange interesting news or opinion pieces throughout the days...

And he appreciated it. It had made him feel sad to hear it, but still he wants to know. He wants to share my struggles, not hear about them after I've been fighting them and getting dark, darker, darkest thoughts, all by myself.

More stories in the 'Limited Mobility | Unlimited Stories' series

Limited mobility | Unlimited stories: Learning to share the pain was published on and last updated on 21 Mar 2019.