Webinar Recap: Advocating for yourself, finding joy, and embracing acceptance with chronic pain

Webinar Recap: Advocating for yourself, finding joy, and embracing acceptance with chronic pain

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.

Jenny Grover

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, try this handy locator tool. 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 the National Fibromyalgia & Chronic Pain Association offers a health care provider directory.

If you’re afraid you’re going to lose access to your pain medications, or your health care provider is already cutting back on medications or you’ve been denied pain care in any capacity, check out this resource from U.S. Pain Foundation.

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, U.S. Pain Foundation’s 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!)

Finding joy

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)

Crafting, including making quilts that I can share with others (you can see a lot of my work on my Instagram account)

Listening to music (I curate a bunch of free playlists for myself and our community over at Spotify)

Eating really good fruit

Meditating (I think the Buddhify app is great for newbies and folks who’ve meditated for decades, like me)

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!

Embracing acceptance

During my webinar, I read a bit about acceptance from my book, ChronicBabe 101: How to Craft an Incredible Life Beyond Illness. It may seem odd to talk about accepting chronic pain or illness—we’re supposed to fight it and cure it, right?

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 an audio interview I did with Toni Bernhard, 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, ChronicBabe.com, and sign up for email alerts about future webinars, videos, and more. You can also find ChronicBabe on Facebook, YouTube, Twitter, 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.

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Authored by: Jenni Grover

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Elizabeth Isaminger

I have severe lumbar and cervical stenosis. I have had two back surgery’s and waiting to see if I am a viable candidate for a decompression surgery. I have had a artificial disc in my neck. I have been in horrible pain. I can hardly function on the pain meds I have know. I am scared I have to admit. My life has changed so much.

Very sick

I know I will never stop fighting for chronic pain patients. I will always tell my story to every government agency around. I refuse to let the [edit] tell me to live in chronic pain.

William Dorn

Accept never we have a right to these life saving medicines. We will never stop fighting for our right to a life without pain. Stories like this must be written by PROP members.

Steven

Jenny thank you! I seek an answer to why we are being ignored just like my comment. It’s just too rugged to entertain. It’s the truth and we all know it. my question is why our government is sweeping the truth under the rug like they are doing with all these wasted lives? That’s it for me. No one’s interested in reality and death, they are just interested in painted smiles and looking the other way while thanking God it’s not happening to them. No more comments from me!

Maureen M.

HI adorable Jenni! I watched that webinar. You did an awesome job and your energy is contagious! Thank you!
I’m a very long time chronic pain sufferer and naturally think I know it all (haha) by now, yet I’m consistently educating myself on more and more. Partly out of boredom when my pain won’t let me leave my house! Haha
I’ve know of you for a few years now but have never followed your videos, book etc.
So, thank you for this post of yours and the links and the incentive to pay more attention to all that you have to offer 🙂
God Bless you for all that you are to our community.
Have a great weekend! Maureen M.

Kris Aaron

Please tell me I’m wrong about your definition of “acceptance”… but when I hear that word, it says “no more opioids ever again.” I’m sure that’s not what you meant. It can’t be!!
But according to Physicians for Responsible Opioid Prescribing (PROP), “acceptance” means exactly that: Accepting that physical pain must not be treated with opioids for any reason.
Accepting that every movement will cause suffering.
Accepting that because some people have overdosed and died on opioids (the majority of those opioids being multiple illegally imported narcotics combined with alcohol) chronic pain patients can never know relief from physical suffering.
Accepting that our prescription opioids are no better than heroin cut with fentanyl and polluted with contaminates.
That’s PROP’s contention.
I “accept” that my body will never be normal again. I “accept” that I’ll need opiates to control pain for the remainder of my life.
But I refuse to accept PROP’s assertion that taking any opioids for any reason puts us on a highway to hell. I disagree with that, and my physician, who is a pain specialist, also disagrees.
Why does PROP believe it? Well, the leading spokesperson for PROP is Andrew Kolodny, MD, an addiction specialist who sees opioids the same way a hammer sees a nail.
When misused, opioids are addictive. But they have long been known as the only proven way to successfully address chronic pain; I refuse to “accept” that I should live whatever is left of my life without the relief they bring.
I refuse to “accept” that a doctor whose entire career has been built on addiction issues knows as much as my physician about treating chronic pain.
I’ve accepted enough. I refuse to accept nonsense.
Please tell me that “accepting” doesn’t mean accepting a life of uncontrolled pain!

Virginia

I love it!!! All those things plus, just one more, not one single person seems to think, or at least mentions.
Hope of our next life without pain with Jesus! That’s my mainstay! That’s Who keeps me going and Who is the keeper of my heart, and my Rock.
It is such a blessed relief to gather from all of you the nuggets of information to help me through my pain. To hear I’m not the only one who has the same issues, problems and concerns for others. Truly I’ve found a new family of friends, sisters and brothers coming to this blog of National Pain Reports. I’ve referred many to you, by the way.
But my questions are how many truly wonder about after this life? Where you will go? Do you really believe this life is it? After all this suffering, after learning about how your body has held you together this long in spite of things, there’s a better place awaits you. Just rest awhile, take it easy on yourself, and come to Lord Jesus. What more do you have to lose.
In His love.