Cane and Able: #15 Coming Inbetween

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Chronic pain affects relationships. Simple as. Be that family, friends, collegues, partners, the medical profession or even complete strangers.

There needs to be acceptance on both side of certain facts:
For one unless you experience chronic pain it is hard to understand the extent of it. Whilst this sounds like a cop-out - it's an unavoidable truth and something that would never be wished upon anyone. It is also the source of greatest frustration in building up a relationship. Both sides will be inadequately equipped to explain to the other side how they feel, attempts often come out as offensive in some form "Oh you wouldn't understand" is a quick way to put the other side on the defensive after all!

There needs to be clear communication - also restraint on both sides.
For the person feeling pain there needs to be explained, clearly and calmly (preferrably in a lull of the pain and when not drugged out of your gourd) of what the partner is expected to do in certain situations. This might be as simple as "pop the kettle on and let me lie down for a bit" to instruction on what medications are where to descriptions of how to handle specific joints if they dislocate (again, could be as simple as let me grab your hand and don't squeal like a girl when I'm putting my hip back in place )

For the person in the other half of the relationship - don't hassle! If someone is in pain that they have dealt with for a long time, screaming, shouting and demanding an ambulance is NOT helpful, if nothing else it makes it all the more stressful. Listen to instructions, do your best to remember them or make a note somewhere accessable to you at most times, could be as simple as a memo on your phone. There also needs to be means of contingency plans. If an activity is difficult or impossible for someone with a particular pain condition, consider how it can be adapted, discuss different options.

For the person in the pain side - be open, take notes and discuss things with your partner that might be relevant (Yes, even if they're humiliating, I can remember several arguments from where I kept something rather personal under wraps and the other side just simply did not know.) you might even be surprised that the other half can give input into the condition - I know I was. Take notes when you're in pain, what's the weather like? What medications are you taking? What have you eaten recently? What hurts most? Even keep track of hormones because it all builds up. It's like a recipe, where all the factors are ingredients, sometimes you'll get a nice meal sometimes the flavour will be a bit off and you can correct it, sometimes the best thing to do is scrap it and order a takeaway instead! Make notes, listen to your body and find terms that your partner can relate to. ("You know how sometimes when you close the bedroom door and there's a sock or something caught in it so it feels kinda weird when you close the door and kinda stiff when you close it?" "... Yes?" "Hip.")

It's quite easy for either side to 'give up', one side may be unable to deal with the hassle of their condition and the other the hassle of understanding it. When you're in pain it can be hard to think clearly - it can be all to easy to snap instructions, cry and wail and not give any indication why, depression comes naturally and you feel insular and isolated. The painful part? That's just the beginning of the spiral. The chemicals involved in stress and depression heighten sensitivity to certain sensations, this can (and often does) include pain. In part it is because of a 'like attracts like' response, the brain is wired to notice patterns and link things together, pain makes you sad so when you are sad you are more likely to notice pain. This is NOT an argument that the pain is all in your head - and never should be construed as such. It is an acknolwedgement that both sides need to make sense of and find work arounds for. Might be as simple as having a cuddle on the bed and watching a TV show on the laptop to take your mind off things. Might mean you write down simple instructions on how to make cookies and wave them at your other half until they get the hint

Sometimes things hurt. If you get neuropathic pain it's not visible to your partner where it hurts and when, most guys don't mind you relocating their hands to somewhere more comfortable, some women will tut about it though, it's something they get used to relatively quickly, contact is comforting and does not rely on being held in a specific fashion as long as both people are comfortable. Flinching or swatting someone away can be dejecting and while it may seem mild mannered often the immediate action after swatting someone away from an uncomfortable touch is to attend to the pain, sometimes without so much as a "Sorry, love, that hurt like a *****"

Keep in mind it's nobodys fault when you hurt. It's easy to blame yourself when you feel like crap and it's easy to get in a mood with the other half if they do something particularly clumsy or - from a fragile point of view - stupid. Bear in mind if someone does something to us and we think "That was bloody idiotic, why would they do that?" then THINK! Do people without EDS manage it just fine? Has it happened before? Can you bear it when you're having a good day? It's easy to react to your own discomfort but a lot harder to update people on your status and ensure that you react appropriately. I know I'm guilty as hell of this one. I've snapped at someone who tapped me on the back with a handful of twigs when I was bent over doing something, my muscles tensed from the contact and when I tried to sit up it gave that weird crunching sensation, the one that feels like a sponge being wrung out to dry. Took me a while to calm down about it and we apologised to each other in the end. It's one of the hardest things to keep in mind but it is worth trying to for the sake of any relationship, at whatever stage, be it a new acquaintence to a long term friend or lover.