Supporting a partner or loved one with chronic pain is difficult. Whether you’re having to cope with the transition from being pain free, or entering into a relationship with someone suffering from an existing condition, you’re still going to have to learn a whole new set of skills if you’re going to make the best out of what can at times be a difficult situation.
When I met my wife she already suffered from CRPS. She was from the beginning incredibly honest and upfront about the implications, which was a big help. My hope is that what I have experienced and learned might help other couples and families along the at times challenging path.
I should stress that I’m no expert – I’m just a guy who met and married a girl with chronic pain. The following is based on nothing more than our experience together. In fact, I feel a bit of fraud writing some of this, as I still feel I often get it wrong. Some of it may apply to you, some of it may not. I write it purely in the hope that if you’re looking for help, these pointers might be a starting point.
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1. Understand the condition
Educate yourself. Science may not necessarily be able to answer questions about the cause of your partner’s condition, but understanding it as best you can give you a great basis to begin grasping what they are going through. Read up on as much as possible, and speak to your partner about what you read to find out what does and does not apply to them as no two chronic pain sufferers are alike.
2. Believe people
Interestingly this is not something that occurred to me, but was the first suggestion from my partner when I asked her what should be included on the list. Pain is often invisible and thus an alarming number of sufferers simply have a hard time convincing people that what they are feeling is real. Listen, believe and understand – this in and of itself can be a tremendous help.
3. Accept you can’t take away the pain
I’m sometimes consumed with the urge to ‘do something’ and ‘fix’ things. I have to try very hard to accept that I can’t. My wife’s pain will likely never go away and there’s nothing I can do to change that. Any energy spent fretting over this uncomfortable truth is, frankly, wasted. All of which sounds uncaringly blunt, but is nonetheless the reality of the situation.
4. Ask how to help
It can be hard to resist the urge to predict what your partner wants or needs and then leap into action the moment you think you’re required. In my experience, most pain sufferers would much, much rather you wait until they ask for help. Pre-empting every need and struggle often serves only to ram home how uncomfortable dependence on another can be to live with. No-one chooses to lose their independence, so don’t rob of it people prematurely.
5. Listen to complaints
I hate seeing my partner in pain and I hate hearing about how much it hurts. But for her, vocalising these invisible sensations can be an absolutely vital outlet. To share in the struggle and not be alone, really, is one of the most important things. So toughen up, because listening to someone in pain is nowhere near as raw a deal and having to experience the pain yourself.
6. Understand impatience and accept it affects the whole family
Coping with high amounts of pain has many consequences, one of which can be a short temper or irritability. Try not to take it personally. This is something I really struggle with, but do try and understand that the odd short response or angry outburst is far, far more likely to do with your partner’s pain than any annoyance with you. Unless you’re being annoying of course, in which case stop being annoying! Understand that this applies to the whole family, too. Everyone – even the kids – must have some grasp of the implications of living with pain. It’s better that children grasp the realities of chronic pain than worry that they may have done something wrong.
7. Don’t recommend zany alternative therapy
Your partner has likely read about every pain treatment under the sun, is a far better expert on the subject than you, and will hopefully want to try some treatments themselves. Encourage and support them with this, as anything that might help is worth a shot. Don’t, however, whimsically recall that feature you read in a magazine when waiting at the hairdressers about the miracle cure that is reducing Nutella intake, the healing power of crystals or the ancient Martian art of goat whispering. This is right up there with saying that “everything happens for a reason” in things that are likely to drive a pain sufferer to violence.
8. Point out the things they CAN do when they dwell on things they can’t
Much of chronic pain is about loss. Be it the loss of mobility, the loss of independence, the loss of a job, the loss of friends or the loss of the life they once had. It can be almost impossible not to focus on this, so do try and encourage your partner to also think about the things they can still do. Life may well never be the same, but that doesn’t mean it won’t be good.
9. Let them do stuff, even if you know it will hurt them
My partner will mock me when she reads this as I’m terrible at this one, but do let them do things by themselves, and for you. Be it making the tea, cooking a meal or whatever it is they are capable of, contributing to life and the family is of utmost importance to someone who very likely spends a lot of time being upset about what they can no longer do. Watching your partner do something that hurts them is tough when you know you could do it instead and spare them the pain, but there are times when it is the right thing to do.
10. Don’t become their carer
There’s a difference between caring for your partner and being a carer. You are still a partnership and a team, even if at times your role will resemble that of a carer. They are still an independent person and keeping your relationship happy and healthy is just about the most important thing you can do. Be there with them, rather than for them.
11. Make plans, but be flexible
Don’t ever stop making plans for fear of your partner having to pull out. At the same time, be realistic about the consequences of living with chronic pain. Pain is often just the beginning and can lead to all sorts of secondary complications. Sometimes meetings will be cancelled or outings cut short. Your partner doesn’t want this any more than you do, but their guilt and sadness will only be multiplied if you make a point of your disappointment. Try and be grateful for what you were able to do rather than concentrate on what you weren’t.
12. Support groups
There’s a limit to what even the most loving and supporting partner can offer. I’ve seen the tremendous benefits of my partner connecting with other chronic pain sufferers online. There are communities of warm, supportive people out there who will understand their suffering far more than you ever can. Encourage them to seek out these groups as there’s no such thing as too much support.
13. Pain is your common enemy
Your partner is not their pain, and it’s not your partner’s fault when they’re in pain. They are not being obtuse when they have to lay down or can’t do something they had planned to. The pain is your common adversary, and your best chance to fight it is doing so together.
14. Acknowledge your own feelings and grief
You’ll be in a far better place to support your partner if you still take time to look after yourself. Be honest about how the pain impacts on your life. In the same way that you work together to improve things for your partner, that same partnership can help make things better for you. And the better you are, the better you can be for them.
15. It will be hard
There are few things in life I find as hard as watching my wife suffer. I hate it and would do anything to stop it. But I can’t, and as cold as it sounds there is literally zero point getting angry about it and wishing things were different. If you love your partner then there is no struggle you shouldn’t be willing to face together. Pain changes relationships, but it shouldn’t end them. Accept that your partnership will be different to your friends or the picture-perfect ones you see on TV, but that does not for one moment mean it will be any less meaningful or rewarding. In fact, going through this struggle together can bring you together in a way the ‘norms’ perhaps can’t appreciate. You’re a bit special, and that’s actually pretty great.