By Jenni Grover.
Last week, U.S. Pain Foundation sponsored a webinar that included some robust Q&A with me and our community. Making time to answer questions and encouraging dialogue with people in pain is an important part of my work, and I’m thankful any time I get the opportunity.
When I do live Q&As, I always get questions on two topics that I can’t really address properly—but luckily, U.S. Pain Foundation has resources for those:
If you’re having trouble getting your health care provider to take you seriously, or you’re having trouble locating a provider, . I also recommend that you go hunting for advocacy organizations for your specific condition and see if they have a health care provider tool. For example, I have fibromyalgia, and .
Now, on to a quick recap of the main topics I covered, plus a ton more resources:
Advocating for yourself
When we live with chronic pain, we have symptoms every day—but most people in our lives can’t see our pain or our experience of suffering, so they may not understand it at all. A few audience questions were about how to explain what it’s like, or how to “prove” that we have chronic pain.
It may feel unfair, but it is up to you to do some of the educating of your loved ones. If they don’t live with pain, they will have no way of understanding what you’re going through—we can’t expect anyone to read our minds. Hopefully, they receive your guidance with open hearts and minds and do their best to understand you.
First, I always suggest that you send your loved ones to this site, , and websites for specific conditions you have. You may want to collect a few links to favorite blog posts by people with your condition, so you can easily email those to loved ones or share them on social media.
Second, I often suggest that you invite a loved one for coffee or a visit to talk about what you’re going through. Explain that you’re struggling, and you understand they may not have a frame of reference for your experience, and that by talking it through you hope they will understand and provide more support. (Always remind them that you’re willing to support them in any way possible, too!)
The idea that you can have chronic pain and live a joyful life can sound impossible, I know! But it IS possible. One audience member asked how I remain so upbeat, so first I want to say that I’m not always upbeat. To expect anyone to be is unrealistic; I’m human, after all, and I have anxiety and depression along with chronic pain—so there are some days when I’m a serious grumpus.
But most days, I’m able to find joy. A few things that bring me joy include:
Spending time with my friends’ kids, who have hilariously humorous tendencies and are able to find something to love about even the most boring things (like empty cardboard boxes, or finding earthworms on the sidewalk after rain)
Eating really good fruit
Listening to podcasts
Staying in touch with people (I text at least five friends every day to say hello and ask how they’re doing)
And many more. I keep a long list at my desk as a reminder to myself—maybe you could make a list for yourself!
Yes, but also… if we are fighting our illness and pain all the time, we end up fighting ourselves, fighting our own bodies. We eventually begin to hate our bodies, which can lead to lots of negative thoughts and even self-harm.
I believe that instead, we must learn to accept the things about our health that we can’t change, and then work to change the things we can. Accepting that we have chronic pain isn’t giving up or being weak. In fact, I think it’s a strong stance. When we’re not fighting our bodies all the time, we have more emotional and physical energy to do the self care that provides us relief!
If the idea of acceptance is new to you, I urge you to listen to , author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Toni has lived with chronic illness and limitations for many years, and she explains how acceptance can be an enormous gift to those of us who have chronic pain. (And you don’t have to be a Buddhist to practice acceptance!)
More opportunities to connect
There’s no way I can recap the entire webinar and Q&A session here, but I hope this has provided a taste of what I shared last week. If you would like to chat with me about life with chronic pain, head over to my site, , and sign up for email alerts about future webinars, videos, and more. You can also find ChronicBabe on , , , and more.
Jenni Grover is founder of ChronicBabe and U.S. Pain Foundation Ambassador – Illinois. Her first book, ChronicBabe 101: How to Craft an Incredible Life Beyond Illness, was published in 2017.