No, I will not be running a marathon with you.
Chronic pain is something we see often here. Two of our team members live with Ehlers-Danlos syndrome, along with a number of our clients and we specialize in treating people with chronic pain to have a full life.
We’ve noticed our news feeds getting filled with New Year’s resolutions (and we’re sure yours are too). We see friends planning to run marathons, become morning people, learning to meal plan, and all sorts of ambition things like those. Quite honestly though, that sounds exhausting.
We figured those of us who are just trying to adapt to life with conditions and bodies that don’t always cooperate with us needed some resolutions of our own! So, here are seven of our resolutions, created in hopes of helping folks with chronic pain:
1. I will measure my health using my own standards of wellness
Comparing ourselves to others is an easy thing to do, especially in the age of social media. But when you’re living with a chronic condition, those comparisons are almost always unfair. For example, it can be easy to say, “Going to CrossFit is a healthy lifestyle choice.” However, for someone with hypermobility, going to a CrossFit class could be downright dangerous.
Rather than approaching health as a one-size fits all, maybe it’s time for us to start asking what healthy looks like for us. And if it means taking a nap instead of going to CrossFit? Power to us for making the choice that’s best for us.
2. I will push myself only when it’s in my best interest to do so
There’s a prevailing idea in health and fitness that “pushing your limits” is healthy. Why run a mile when you can run two? Getting out of your comfort zone is seen as a noble effort, and while it can be, anyone with a chronic condition can tell you that it’s not always a good idea. Maybe your body is tiring out because you’re, well, tired. Maybe your anxiety is there because you’re at risk of burning yourself out. Maybe your feelings are acting as messengers, letting you know when it’s time to slow down. There’s no good reason to risk injury, especially when it comes to chronic illness. In the New Year, I’m going to honor my body and listen carefully when I’m approaching my limits.
3. I will view my lived experience as expertise
How many times have you known, intuitively, that something was wrong or off, only to have others insist that you were actually fine? We hear from people with chronic illnesses all of the time that others dismissed their concerns, suggesting that they didn’t have the “medical expertise” to know something was off. But here’s the thing: You are the expert on your own body. If you know in your gut that something is wrong, you have very right to advocate for yourself to ensure your concerns are addressed.
Whether it’s seeking out a second opinion, pushing back on misguided advice, or asking for additional tests, no one should be discouraging you from trusting yourself and advocating for your health.
4. I will rest when I need to – without judgement
“Rest” has a bad rap, particularly in the United States, where we live by the dogma of “the hustle.” Overworking (commonly disguised as productivity) is considered glamorous, but something as simple as a nap is depicted as a luxury. Where does that leave those of us who need to rest a little more often to function well? Many of us wind up feeling guilty, questioning if we sleep too much, or criticizing ourselves for not “working harder.” In the New Year, I’m going to be kinder to myself, affirming my right to rest.
5. I will practice asking for what I need
We’ve found that by and large, people with chronic illness feel guilty asking for support, because they feel like a burden on the folks that they love.
But here’s the thing: it’s okay to ask for help.
It takes courage to voice when you need support and when we find that courage, we open up about a space where people around us have permission to be honest about their needs too. You’re making the world a better place just by keeping things real.
6. I will celebrate my successes, big or small
For people with chronic illness, the smallest things can be huge victories. But we don’t always acknowledge them as such. For 2019, I want to slow down enough to celebrate my success, whether it’s a breakthrough in therapy or just getting out of bed in the morning.
When’s the last time you celebrated your progress – on your own terms?
7. I will try to be assertive with my clinicians
There are some really great clinicians out there, and there are also some lousy ones. Sometimes, clinicians can feel dismissive, often without intending to be, when they are unsure of where the pain may be coming from. It’s hard when all of our symptoms might not fit into the perfect boxes that our world likes to create. But by speaking up, you can ensure you get the help that you deserve.
Practicing being assertive can make a big difference.
Some statements you can rehearse:
“This isn’t what I’m here to discuss. I’d like to focus on…”
“In my experience, that hasn’t been helpful. What else did you have in mind?”
“Can you explain why you believe this recommendation will improve my symptoms?”
“I’m confused, because I’ve read clinical research that suggests the opposite is true. How recent is the information you’re going off of?”
Many of us don’t realize that these are statements we can actually make, or we’re afraid of coming across as confrontational. But remember, clinicians are here to help us – it’s their job! – and we have every right to the best possible care.
In 2019, you’re in charge – so it’s time to make the choices that are best for you, and trust that you know yourself and your body well enough to make those decisions.
Cheers to the New Year! We hope that as you ring in the New Year, you take time to celebrate everything it took to get here.