Abby Elder. Provisional Psychologist
“It can’t be that bad!” My doctor exclaimed while studying my face with a look of pity.
I had entered his consulting room in a hobbled posture trying to describe my situation in a wobbly voice. For the last week the pelvic pain I had become accustomed to feeling since I was thirteen years old had become extreme, leaving me bedridden for four days.
I did not know it but I was experiencing a flare up of pain symptoms related to endometriosis. I am now struck that I cannot recall the exact sensation of physical feeling of pain or its severity. What I can remember is the emotional impact of the symptoms of chronic pain.
You might be reading this because your child has been diagnosed with endometriosis. Or perhaps a young person you know is experiencing chronic pain but not yet diagnosed with a disorder.
Either way the impacts of chronic pain, especially pain related to endometriosis, can have significant negative impacts on a young person’s mental health, as well as members of their family.
This blog post cannot provide medical advice, but will provide strategies to support a young person who is experiencing chronic pain to get the help they need.
Keep reading for strategies to better understand pain, communicate with family members about chronic pain, and why it is important for your child to be their own pain spokesperson.
Endometriosis - a chronic pain disorder
Endometriosis is a medical condition that affects roughly 1 in 9 Australian females. It is considered chronic because there is no cure and those diagnosed with endometriosis can experience symptoms their entire lives.
Medical research is still defining endometriosis, from its cause, effective diagnosis, and the incredible range of symptoms and severity, as well as how to best treat those symptoms. This uncertainty can leave young people and their families grasping for solutions, like they are trying to solve a complex puzzle with no guiding picture.
Endometriosis tip sheet written by Endometriosis Australia
Chronic pain and youth mental health
Chronic pain can impact all people at any age. Pain Australia estimates that one in four young Australians experience a form of chronic pain. Children and adolescents can be experienced through endometriosis as well as migraines, sports injuries and symptoms of chronic diseases such as juvenile arthritis.
An important difference about chronic pain is that it is a lifelong condition that ebbs and flows. This is different from acute pain such as breaking an arm. While an acute pain is distressing, it will usually come with an expiration date of disruption to one’s life.
Because chronic pain can be expected to be felt in some way across a person’s life, an individual can develop feelings of hopelessness and helplessness related to their pain.
Disruptions in a young person’s life can mean missing large amounts of school, difficulty socializing with friends, and loss of enjoyment during activities and events. Pain Australia estimates young people experience disruptions in their physical activity at a higher rate than adults.
Young people are still defining their identities, what they are good at and what they want to pursue with passion. The emergence of chronic pain can impact this development. Parents and caregivers who are supporting young people living with chronic pain must consider not just the physical sensations, but the emotional toll of isolation and disappointment.
You can help a young person who is experiencing chronic pain by defining pain. Pain is a common reality in our society but the reasons a person feels pain are not well understood. By helping young people to understand the biological and psychological components of pain you can empower them to seek the support they need to better enjoy their lives.
Supporting the family unit
For families supporting a young person experiencing chronic pain, the start of symptoms can be a time of disruption. A previously active child might suddenly be limited in their capacity to complete previously enjoyable activities.
Other members of the family might be affected, with parents and caregivers needing to miss work, and siblings missing out on fun activities. An acknowledgement that everyone is impacted can be a start for families to find a new way to support each other.
You might consider making a specific time to come together as a family and put the disruptions into words. It might be helpful to also focus on what each family member needs to feel supported to brainstorm actions to take.
After this initial family discussion consider asking your child who is experiencing chronic pain what level of information they would like to share ongoing with siblings and others. There are times when chronic pain can affect most parts of a young person’s life. If family members are not kept informed in an appropriate way, they might feel excluded and miss out on ways they can support their loved one.
Share this tip sheet for siblings of children with chronic pain here developed by The Pain Management Network
Are you faking all this?
People who live with chronic pain become skilled at masking and getting on with it. This should be worthy of praise, but can also invite criticism from well meaning (or maybe not!) friends, family, and medical professionals. Especially when a person finds themselves unable to hide the pain symptoms.
“It can’t be that bad,” My doctor had said in frowning exasperation.
I did not have the communication skills at that time to challenge my doctor, or to explain my needs. Instead I turned inward to try to solve my complex pain puzzle.
I remember thinking, “Maybe it isn’t that bad?”
The Pain Management Network encourages parents to make children the spokesperson of their pain when possible. Maybe a young person verbally describes their symptoms at medical appointments, or parents and children brainstorm which pain management strategies work best for the child.
Making the young person their own pain spokesperson will help them develop assertive communication skills for describing their pain with the knowledge their parents can back them up when needed. This may increase a child’s sense of autonomy, and decrease feelings of helplessness associated with chronic pain.
It can also stop those nagging feelings they might have when a medical professional might appear dismissive. A firm reminder to themselves that they are not making it up, that their physical needs are worthy of being communicated.
If you are after support for managing Endometriosis or chronic pain, please contact the clinic.