It is widely reported that chronic pain affects nearly 100 million people in the U.S. annually – more than diabetes, heart disease, and cancer combined. While this figure is high, it is still not quite accurate. Chronic pain affects more than just the patient – millions more are affected by the chronic pain of a friend or a loved one. In a recent New York Post article, one family chronicled their ongoing journey through chronic pain with their daughter, Veronica. Watching a child suffer from chronic pain is an experience that can be devastating to a family. Veronica’s family goal is to share their story of struggle, inspiration, and hope for the future.
Meet Veronica and learn about her struggle with chronic pain
In 2015, Veronica Malkin found herself suddenly unable to breathe and completely bedridden. Previously healthy and active, Veronica began to suffer from physical and neurological symptoms that left her with “air hunger,” fatigue and pain.
When she was diagnosed with Tourette’s syndrome, her family hoped that treatment for that condition would bring her back, but when Veronica returned to school part-time she was unable to make it through the day, suffering from extreme fatigue, pain, brain fog, and weight loss.
When Veronica left school, exhausted and in pain, her friends and social support system evaporated. Undiagnosed and still suffering, Veronica began to spiral into isolation and depression. A common feature of chronic pain is how others react to it, saying things like “But you don’t look sick” or “It’s all in your head.”
As Veronica’s friends disappeared one by one, her depression deepened. Her family began to lose hope of finding answers.
The Mayo Clinic provides hope
Just as they began to lose hope, Veronica’s family found The Mayo Clinic and their Pediatric Pain Rehabilitation Center in Rochester, Minnesota. This three-week program runs specifically for adolescents and young adults suffering from chronic pain. It uses cognitive-behavioral therapy, physical therapy, occupational therapy, and recreational therapy to help young adults and their families cope with all aspects of chronic pain and illness.
At The Mayo Clinic, Veronica was eventually diagnosed with multiple chronic illnesses, including:
- Dysautonomia: This is a catch-all term for many different conditions that disrupt the regular functioning of the autonomic nervous system (ANS). The ANS regulates reflexive actions in the body such as heart rate, blood pressure, digestion, dilation, and constriction of the pupils of the eye, kidney function, and temperature control. An estimated 70 million people in the world live with this condition.
- Postural orthostatic tachycardia syndrome (POTS): Approximately 1% of teens in the U.S. are affected by this condition that can cause lightheadedness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, and temperature sensitivity. It seems to affect girls more than boys.
- Pain-amplification syndrome: A condition of the nervous system, pain amplification syndrome causes a heightened sensitivity to stimuli. This causes the body to process normal stimuli (such as a light touch) as extraordinarily painful.
Any one of these conditions alone would be difficult, but to have all three in combination requires more than just a pill to treat. The Mayo Clinic’s combination of mental and physical therapy and focus on moving forward helped Veronica and her family to develop the tools they needed to thrive in daily life. Meeting others suffering in the same way allowed Veronica to see that she truly was not alone in her struggle.
Returning to school, empowered by what she had learned, Veronica received support from school counselors and the new friends made as an athletic trainer. While daily life can still be a struggle, Veronica and her family fought hard to get their lives back and are winning that battle.
What works for chronic pain
What worked here was not magic. What worked here was coordinated care, loving support from family and friends who understand what Veronica is going through, and hard work by Veronica herself. Children and young people and their families have a particularly difficult time coping with chronic pain for a wide variety of reasons.
1. No easy pharmaceutical interventions
Medications may be only one part of a pain management plan, but they are usually not tested on children. Dosing recommendations and listed side effects are based on extrapolations from adult dosing and side effects. For this reason, many doctors are very reluctant to prescribe medications. This means that in acute stages, children may be in unrelieved pain that is difficult to bear.
2. Few child-centered treatment options
Again, most chronic pain treatment options are designed for adults. Even counselors for children are few and far between and often very difficult to find. Once a counselor is located, the wait for an appointment may stretch into months. The Mayo Clinic is one option, though they cannot possibly serve the estimated 15 to 20% of children and young adults suffering from chronic pain.
3. Difficulty expressing themselves
For young children especially, expressing the type, location, and intensity of chronic pain can be difficult. This may result in children who are suffering silently. Children in pain may also express themselves in other ways, such as through behavior (tantrums, anger), changes in sleep (difficulty falling or staying asleep), and changes in appetite.
Families of children in pain need to be especially vigilant to read other signs of pain.
The impact of chronic pain on the family
Chronic pain’s impact on families cannot be underestimated. Many families feel incapable of dealing with the complexity of treatments or don’t understand that there may be options. There are a few ways that families can cope.
- Recognize that it is hard: Families of kids with chronic pain need to cut themselves some slack. Chronic pain treatment is a marathon, not a sprint, and parents and siblings aren’t perfect. It is important to also understand that chronic pain in children can bring up many different issues for families – fear, uncertainty, helplessness. Families of children in chronic pain should also be working with a counselor to work through their own emotions.
- Understand that the child is not the illness: Consumed by doctor’s appointments and treatment regimens it can be easy to forget that the kid in pain is not their illness. Families need to make time to discover and nurture the gifts and interests of all family members, including the child in pain.
- Build self-awareness while validating the struggle: Kids with chronic pain may not feel like moving around, even if that’s what the doctor recommends. Validating the struggle while building self-awareness is a powerful step to help kids develop persistence and resilience. This can be a simple statement like, “I know that you are hurting and tired today. Remember last week when you started the day like that and went to see your friends and felt better? Maybe we can try that today to see if it works. I know it’s tough; let’s figure out a way to make it work.”
- Practice self-care: Families need to care for themselves when caring for kids with chronic pain. Compassion fatigue is a real syndrome that can result in serious health problems for caregivers. Taking time to practice self-care can rejuvenate and help keep the whole family healthier.
Veronica’s story of coordinated care highlights the importance of a strong family support system and comprehensive treatments that get everyone involved. If there is a child with chronic pain in your family, we’d love to hear your story in the comments.