Every child has anxiety now and then. Maybe it’s the first day of the new school year or a big test. Maybe they have a new crush on one of the kids in their class and they don’t know if they should let them know.
Children that are chronically ill have many layers of anxiety.
First, they may feel like a medical case study; enduring never ending doctor appointments including all kinds of specialists, lab appointments, medical procedures, testing and trials of many medications. Each specialist has their own set of tests to run. Side effects from new medications can be worse than the child’s illness itself. These kids are poked, prodded and analyzed in every direction.
Second, many live life never knowing if there is an end in sight to their predicament; simply feeling as if there is no apparent end to the issues that come with/result from their condition(s).These kids have been dealing with not feeling well for up to a year or over the span of many years in their short lives.
Due to these circumstances, many of these chronically ill children (my son included) develop what I refer to as Medical PTSD. Due to a wide range of very unfortunate circumstances, they have had a negative medical experience along the way.
For example, a simple lab draw may have gone bad where the nurse couldn’t get a good vein and really hurt them. A medicine that they tried may have caused terrible side effects. With chronically ill children, these negative experiences add up over time… to the point where anything around medical begins to trigger an uncomfortable response.
The Mayo clinic describes Post-traumatic stress disorder (PTSD) as a mental health condition that's triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.
My son developed medical anxiety early in his journey.
I have first-hand witnessed the impact that tests, procedures and meds have had on him. I don’t think there was one single event that caused the medical PTSD. It was a slow build up over multiple events. The following are just a few occurrences that led to the development of my son’s medical PTSD.
In one instance, my son was having several labs drawn. No one had ever told us that if you are having several labs done, be sure to hydrate extra beforehand. He did not have enough fluid in him and the blood would not flow from his vein; actually getting quite painful. The nurse he had wasn’t particularly nice about it and made him feel like he was a weak person. No medical professional should ever do that to a child!
Additionally, various medications along the way have caused side effects including terrible nausea and dizziness.
In another instance, he threw up the medicine, creating a tear in his passageway, which caused some bleeding and another ER visit.
No one can blame these kids for developing medical PTSD. The anxiety can show itself in various ways depending on the child. In our case, my son refused to try any new meds for almost two years because of potential side effects and reactions, no matter how small the chance or effect.
As a teenager, I couldn’t convince him otherwise. I totally understood his stance but still it was very hard on me and often left me conflicted. On one hand, a new medicine might just make all the difference in his quality of life. On the other, I wasn’t sure I had enough strength to witness my son living through / having another terrible side effect.
So as a parent, here’s how I handle my child’s medical PTSD. Hopefully these will help you along your journey:
Acknowledge and validate your child’s concerns. Just like we hold wonderful events in our hearts and heads, we hold the unpleasant ones too. I acknowledge and discuss the past events, letting him know that I realize he is having to endure things that normal healthy children do not.
Negotiate with your child / age-dependent of course. Of course, negotiating depends on his age. In our case, we discussed how often he was willing to try a new med or visit a new specialist. How many new doctors is he willing to try? How long of a break from trying new medicines?
Give your child some ownership in scheduling. If there is a procedure to go through or a new medicine to try, we get out the calendar and plan together. I have him participate in the planning and scheduling.
Give your child the extra encouragement they so desperately and greatly need. I offer up words of encouragement often and openly. Providing additional words of encouragement is not over protecting your child or babying them.
Get outside counseling if needed. I can’t emphasize this one enough. Sometimes, it takes a therapist or other professional to help out. Find someone who has experience with (pediatric) chronic illness.
Medical anxiety in your child is a heart-wrenching thing to see and experience.
I want others to know they are not alone. For me, it took reading a Facebook group post to realize we are not alone. Just recognizing that other children have had similar issues has helped both my son and me tremendously. Just remember, you are not alone. Keep pushing through and brewing more hope.
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.