Self Awareness and the Gift of Chronic Pain

Self Awareness and the Gift of Chronic Pain

Editor’s Note: Erin lives in a Minneapolis suburb with her husband and daughter. She’s 30 years old has suffered from arthritis since she was 5 years old. She advocated for those with chronic pain and Medical PTSD awareness.

When I saw National Pain report put a call out for writers for chronic pain awareness month, I was eager to write. Finding a specific topic to focus on showcasing my chronic pain experience proved to be indecisive though.

There are times I tend to reflect on what chronic pain has taken away from me, but then and even more so times I reflect on what chronic pain has given me? As much of a challenge life is dealing with ongoing aches and pains… there is indeed a take away from a pained life. With that I would like to share my experience, strength and hope.

My earliest memory of pain goes back to when I was five years old. I was bowling with my family, when my legs seized up and I was unable to walk, this was followed by years of appointments. I had days where I struggled to walk, and nights of screaming pain, still though was unaware that this struggle was different than other kids.

Erin Joyce-VonBank

Erin Joyce-VonBank

At the age of 9 I started to realize that things were different in my life, than others. I struggled to run and participate in physical education class, often times feeling so shameful of the fact that I was not athletic like my sister and friends. To feel adversity is very much a challenge, to feel adversity at such a young age was devastating. However not fully understanding the parameters of arthritis, I did not know that arthritis was a disability, and that it was in fact, ok to not be like my peers. Around the age of 10 figure skating became a huge part of my life; it was something I could do, without as much stress on my joints. More importantly it was a segue in my life to open my self confidence back up to the possibilities of being active with arthritis, and well since then I have not really looked back at limitations.

As I have aged over the years, I have come to learn that arthritis really is just a symptom of much broader health concerns. However it is my biggest challenge still day to day. My mornings usually include an inventory of what hurts before I even get out of bed. I lay and do a mental scan of what hurts, indexing each joint for their morning roll call. Some days it is minimal, and I am up and out of bed. Then other days I will lay and question what my strategy will be to get out of bed, and if I can manage to walk. Either way though, my day begins- or it begins with self awareness.

Self awareness, for me represents many things. It represents my ability to function within what limitations are presented each day. It represents my ability to speak and advocate for my specific needs and health care concerns, it also means being aware of what I have received in return from a pained life.

These gifts of a pained life are the silver lining of 25 years of challenges. They are very precious to me. How can I use my experience to empathize with another who shares a similar journey? There is a sense of gratitude to be able to fully embrace the blessing of being able to say “I understand” and show compassion to another person. It is also something that I have felt reciprocated amongst the chronic pain community.

Through the chronic pain community (Specifically the Minnesota Ehlers Danlos Community, and Sphincter of Oddi Dysfunction community) I have made connections and friendships over something that is often isolating. We share in each other’s joy, fear, sadness, and hope. I have learned to celebrate and embrace the good days, and share my need for support during the harder days.

I honestly can say I am grateful for my chronic pain. Though it is not something I would choose had I been given the choice, it isn’t all bad. I have grown to have humor about this life, developed resiliency, and a drive of ambition to really embrace what is beautiful, even if it is a result of chronic pain.

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With all due respect to the author, severe chronic pain is not a gift. Excruciating pain only takes and takes. It doesn’t give.
It’s natural to want to make sense of suffering. Perhaps we’d all go mad if our minds concluded our pain and suffering offered no positives. But awareness and gratefulness are byproducts of a human spirit attuned to understanding that life, not pain, is the real gift.
If pain were a gift wouldn’t we wish it for our children or loved ones? I’d never wish one moment of the severe pain I endure on my children. I doubt any pain sufferer would. Pain just isn’t some wonderful mystical gift to package with a bow and share. We may have to endure it, and choose to live in spite of it, but I for one will never embrace it as a gift.
I’m also confused at the portrayal of ice skating as an activity less stressful on joints except for maybe it was the gliding? Weight-bearing would seem to be an issue, and given how arthritis can affect balance that hard surface might prove pretty problematic :0 Maybe Im just a klutz! I’d rather the buoyancy of warm water and save the ice (in gel packs) for pain relief!

Each story I read about other chronic pain patients offers that one persons point of view about their pain and their suffering. All different than my own yet we all share that single common bond – PAIN. Erin was so young to be saddled with such a horrific problem at the age of 5. I cant imagine a 5 year old with severe arthritis and what must have gone through her mind at such a young age. If we look at our problem with a ” glass half empty ” attitude then its an up-hill battle all the way – if we take a positive approach and embrace our condition we stand a much better chance of winning that battle.

My own problem with pain didn’t start until I was 28 years old, I’m now 57 and I learned quickly how much my attitude would affect my pain.

I could never do an inventory of my pain for that day because that wouldn’t work for me. Thinking more about it will only make my pain worse. In Erin’s case she found it was helpful so she continued and made it part of her daily routine. I applaud her for her honesty and her power of – ”mind over pain”. Our brain is probably the most powerful weapon we have against pain and as we learn to use it in a more positive manor, we will take control over the pain instead of the pain taking control over us.

When I first went back to work after 5 years on disability I was constantly being asked by members at the Golf Club I was working at ” John, how’s your back today ? I simply got tired of telling people how badly it hurt so after a month or so I made my standard reply to the question ; ” My back feels great today” Within a few weeks it was obvious that those few positive words had done something wonderful and it all started with my brain and just a single positive thought. My brain was telling my pain ” I’m not going to let you win”. No its not a cure but it is part of my arsenal for fighting the pain battle.

If you sit around all day feeling sorry for yourself you will only get worse and your pain will seem to increase. Its a ride that goes round and round in a vicious cycle with one bad thought making the next bout harder to deal with. The key is to break the cycle like Erin did and like I did. Don’t give in and don’t give up – that nasty pain is just waiting for us to lower our guard. So, keep your chin up, it makes for a better target.

Thank you,

John S

Brenda Flippen

Hi Erin ! I read your story and so much was familiar with my condition(s). What I really noticed was your mention of Sphincter of Oddi distinction. This is the first mention of that I have seen in any stories or support groups. Honestly I had never looked for groups for support. I had never met anyone who had this or even knew about it. I was diagnosed in 96, finally. But had the pain and problems from it as long as I can remember, along with all the other pain I have daily. And have had for as long as I can remember.

I am so glad you are able to go out and help others, I admire this. I do what I can online but would love to be able to meet other folks who I might be able to help.

This life is not for the faint of heart, it takes strong people to deal with pain, and we are very lucky to be two of the strong that can. This life isn’t for wimps ! Lol Enjoyed your letter and now I will search for a “Sphincter of Oddi Disfunction’ group, thanks to YOU !😎

Brenda Flippen, always looking for the brighter side !