As we’ve said in a bunch of previous blogs, there’s no “magic pill” to cure all your symptoms associated with chronic pain. It takes hard work on the patient’s end and a medical team dedicated to finding the right solution. It’s not going to be easy, but it will be worth it.
Recently, I read a story about one family’s plight with chronic pain and felt compelled to share it. Originally posted in the New York Post, Michelle Makin pens a piece about how one family has battled through the troubles associated with chronic pain, learning the lesson we preach – that’s there’s no magic pill, but solutions are in reach.
A Daughter’s Battle Against Chronic Pain
As Veronica marks her 16th birthday this month, we are sharing an update in hopes of de-stigmatizing and demystifying life with chronic pain, fatigue and other undiagnosed chronic illnesses.
It’s been a year since Veronica lay bedridden, unable to breathe normally, felled by a mysterious combination of neurological and physiological complications that dozens of doctors couldn’t quite pinpoint. We thought we had a definitive answer when she was diagnosed with Tourette syndrome last July. But it turned out to be the tip of a medical iceberg.
Though her alarming bout with ‘‘air hunger” dissipated and she willed herself back to school part-time, she could still barely make it through each day. Despite normal blood tests, her exhaustion, brain fog, migraines and weight loss made it nearly impossible to function.
If you’ve suffered from chronic illness, you know the social ostracism that comes with it. ‘‘It’s all in your head,” ‘‘Stop being so dramatic” and ‘‘You don’t look sick” are some common responses from armchair doctors.
For teens, the isolation is wrenching. Veronica lost almost all of her ‘‘friends” last summer — too shallow or self-absorbed to care or comprehend her condition. Depression set in. We were losing her to an abyss of hopelessness.
Then came the Mayo Clinic. The renowned Rochester, Minn., practice runs a Pediatric Pain Rehabilitation Center for adolescents and young adults with chronic illnesses. It’s basically a three-week boot camp to equip young patients and their families with skills to get their lives back through cognitive-behavioral therapy, physical therapy, occupational therapy and recreational therapy.
We learned that Veronica’s basket of seemingly random co-morbidities is common among those diagnosed with dysautonomia, postural orthostatic tachycardia syndrome, hypermobility and pain-amplification syndrome. Her brain and body are wired differently; the triggers are unpredictable. We learned that the ‘‘what” of Veronica’s symptoms didn’t matter as much as the ‘‘how” to help her cope day to day.
There are no magic pills. It’s a tough-love crash course in hard work, personal responsibility and mind over matter. I’m not exaggerating when I say some patients enter the program in wheelchairs or on crutches — and leave on their own two feet with the ability to walk or even run after months or years of inactivity. The goal isn’t to eliminate pain or cure sickness, but to restore functionality.
For Veronica, exposure to and bonding with other teens saddled with similar conditions — and in some cases, much worse — was life-changing. It’s one thing to be told by a specialist ‘‘you’re not alone.” It’s another to join a family of survivors riding the chronic-illness roller coaster together.
Since completing PPRC last fall, Veronica has had more good days than bad. She didn’t let her migraines, second shoulder surgery for subluxation, severe joint pain or OCD stop her from finishing her sophomore year of high school. She has remained close to several of her fellow PPRC grads and made new friends at home.
She received a lot of help along the way. A caring counselor helped her become an athletic trainer at her school, which enabled her to rebuild her social life.
Mental-health professionals successfully treated her OCD and depression using a combination of medication and exposure therapy — an agonizing but effective treatment that required her to confront her fears. Gifted physical therapists continue to treat her joint pain and train her to manage it.
One of the most intriguing aspects of PPRC is the mandate to stop dwelling on symptoms. Talking and thinking about pain or fatigue all the time reinforces the neural pathways for pain and fatigue.
Instead, we focus on the small triumphs each day. We measure life, to borrow blogger Christine Miserandino’s famous analogy, by the spoonful: getting up on time, being able to walk on the treadmill for 10 minutes, completing simple chores, eating well, having a good laugh, breathing free and easy.
So, how’s Veronica doing? The short answer is that she’s doing — and that’s a gift we never take for granted. Happy birthday, my sweet 16 badass. Per aspera ad astra.