Lyme disease, especially when not caught early and successfully treated, can cause long-term tissue damage that leads to chronic pain. It can be hard to know how best to help someone living with chronic pain as it can be tempting to try to take over daily activities and infantilise those who are suffering, or, conversely, it may be that the demands of caring for someone with such pain are too heavy and incomprehensible for many.
Here we offer 10 tips on caring for someone with chronic pain from Lyme disease, whilst always making sure to care for yourself.
1. Don’t Fake It
When you ask someone with chronic pain how they are you should be prepared for any answer they might give. Don’t fake concern if you really aren’t ready to listen when times are tough.
2. Don’t Fetishise Pain
Although you might mean well constantly asking how someone is (and being prepared to listen!), chronic pain is not the only salient feature of a person with a chronic condition. It’s unlikely that your friend or loved one wants to be repeatedly reminded of their health concerns, or that they find it fascinating talking about their pain medications or doctors’ visits. They are not your pet project, an exciting medical challenge, nor your own route to feeling good about yourself. Which leads into the following idea…
3. Do See the Person in Pain as a Person First and Foremost
It’s all too easy to assume that a person’s low mood on any given day is due to their ongoing pain but they may have just had a bad day at the office, broken up with a partner, or had some bad news from their veterinarian.
4. Do Forgive a Little Flakiness
Even with the best of intentions some days can just wipe you out when you have chronic pain or other long-lasting symptoms of Lyme disease. If you’ve made plans with a friend who often flakes on those plans at the last minute then instead of getting angry think about ways that you might be able to help. Perhaps going out for dinner is too overwhelming, or maybe a big crowd or a loud movie will lead to anxiety and headaches. Ask if there’s another way in which they’d like to hang out with you that’s easier for them but also know that it’s not personal if you get that apology text as you’re about to head out to meet them.
5. Don’t Pass Judgement
Sometimes even those with chronic pain want to have a beer, or eat a pizza, or spend the day in bed watching movies. Unless you genuinely think that they’re unaware of possible health ramifications of whatever life and dietary choices they’re making and have no one else looking out for them, it’s best to let your friend have their fun and never say “You know you’ll pay for that later when the pain hits.” This applies in retrospect too; pain today does not mean you have a right to say “I told you so.”
6. Do Accept that Pain Can Affect Memory and Concentration
Not only does Lyme disease sometimes have neurological and cognitive consequences, the chronic pain some people experience with post-treatment Lyme disease can also cause problems with concentration and memory. It might be that you need to communicate in a more precise manner, to repeat things, to avoid writing in long sentence or large chunks of text, and to offer gentle verbal prompts and written reminders sometimes.
7. Do Create Safer Spaces
For those who are able-bodied it can be difficult to realise that knowing there is somewhere comfortable and accessible to sit, somewhere quiet to run away to when everything’s overwhelming, and a quick route home can make all the difference between feeling able to attend an event and staying home. Develop the kind of relationship with your friend or loved one where you can easily ask, without judgement, about any requirements they might have or anxieties they’re experiencing about an event or social engagement. That way you can take steps to make safer spaces.
8. Don’t Think Favours Are All One-Way
One of the worst things for those who have a chronic health condition is the feeling of being a burden and always being the one to ask for help. Friendships and partnerships go both ways so do your friend a favour by asking for their help sometimes too. Maybe you know they’ve got a great eye for colour, or know someone who knows someone who has a great accountant, or can provide a reference for your application for volunteer work. Helping someone feel useful can really help lift that burden of guilt but, of course, make sure not to get annoyed if they can’t help!
9. Do Accept that Pain is a Mysterious Thing
Not all pain is easy to describe, consistent, or logical. Pain can be worse when we’re tired and pain can also stop us sleeping well. We can be stressed because of pain and stress also makes the perception of pain worse. When we’re tired and stressed and in pain we’re not always going to make great decisions about our own health. These are just a few of the ways in which chronic pain from Lyme disease or another condition can make sufferers appear irrational and contrary. Take the good days when they come and be prepared for the bad days, and realise that you really cannot predict when either will occur.
10. Don’t Forget the Small Things
Visiting and making a cup of tea, offering an extra cushion or pillow, donating a free massage, or volunteering to tackle laundry day can all seem pretty small and inconsequential but they can mean the difference between a productive day ending with a sense of accomplishment and a full-scale breakdown in the laundromat when pain makes everything ten times as hard as normal.
Living with chronic pain can be exhausting but it is also a huge challenge for those with pain to anticipate how others will react when they have a bad day. Knowing how to navigate the tough times, remembering that a person is not defined by their pain, and that sometimes the smallest things matter the most can make you a real friend to someone in pain.