When My Daughter Is Blamed for Her Chronic Pain
This week I read a blog about kids with chronic pain that really hit home with me. Published on the National Pain Report, it stated that children with chronic pain are treated differently than adults and that they are often blamed when they don’t get better with physical and psychological therapy. That’s the opinion of Dr. Pradeep Chopra, who is an assistant professor in the Department of Medicine at the Brown Medical School and a nationally known pain management specialist, and I think it’s spot on.
My teenage daughter Rosie has chronic migraines. They’re not little headaches, they are absolutely debilitating and painful and she has at least two a week. She also has dysautonomia; she can’t control her autonomic nervous system and has more specifically postural orthostatic tachycardia syndrome (POTS), both of which are sources of pediatric pain. She’s had a concussion since August (more pain) that she’s been treating with vestibular rehabilitation therapy. She’s also been spitting up blood for 15 months and 10 days, another painful condition because obviously she’s bleeding somewhere internally.
Last winter, Rosie was also diagnosed with amplified musculoskeletal pain syndrome (AMPS) and allodynia, after I reached out to a rheumatologist to help find the answer to why she’s spitting up blood. (For the record, I do think AMPS is a real thing and that the treatment for it works. If that was the only thing she had wrong, I’d buy in a little more. Unfortunately, it’s not the case.) We were happy at first to get a diagnosis that made a little sense. If Rosie had AMPS, then it could explain everything and through exercise, physical therapy, desensitizing and seeing a therapist, she’d be cured. Great news, right? Not really, because it didn’t explain why she was spitting up blood and the moment she got the diagnosis, both of us were treated differently by doctors, social workers and psychologists.
With AMPS, Rosie’s not supposed to use her pain as an excuse. She’s supposed to push through no matter how she feels, and this theory applies to everything in her life — school, dance and social life. We were told that yes, her pain is real, but she can no longer talk about it. We even got recommendations for school that she was to expected to attend full time (which we found interesting since she’d been homebound for a semester), instructing her teachers to ignore her if she was in pain. We fought both the doctors and the school on the recommendations because it was physically impossible for her to tackle that challenge. She didn’t have the stamina. It took weeks for anyone to listen. In fact, I had to go around that team of doctors to our pediatrician to get the letter to shorten her day.
Here’s the thing. Once she was diagnosed with a pain issue as a child, physicians blamed everything that’s wrong on pain. She has a “pain problem.” So, last month when my teenager had a lumbar puncture and it leaked, we were told that “kids with migraines have pain issues and are more likely to have a lumbar puncture headache” like that was a normal thing. She went 11 days before they gave her a blood patch. Right now, she still has blurry vision and we’re having trouble getting anyone to listen because of course, she has “pain issues” and it could be pain. It could also be something really wrong, so maybe we should check.
I believe children with pain issues are treated differently than adults. Our treatment is delayed by four hours until they believe that she actually has a migraine and it’s not just pain (this has happened to us twice). Even when I ask for IV fluids, they look at me askew. The migraines are not new. She’s had them for years and they run on both sides of our family so we know what we’re talking about. Please just treat her so we can go home.
It’s so difficult to explain to people how incredibly challenging life can be when you have a number of illnesses that cause pain. My child physically hurts much of the time. It’s hard for her and it drains me emotionally to see her suffer. After she started spitting up blood, her life changed completely. She lost many of the things that made her happy. She can only attend school sporadically. She can no longer dance. She’s parted ways with many of her friends. Even with all of that, she still has a smile on her face. She still has hope, yet she’s frustrated because no one believes her when she says something’s wrong.
I have to confess that I’ve even fallen into the pain trap. When Rosie first told me her vision was blurry, I told her it was just pain and didn’t listen. In fact, I didn’t get concerned until our vestibular therapist did. Yesterday, when she couldn’t go to school because she “felt bad,” I challenged her and told her she needed to suck it up and go. I even asked her if she was using pain as an excuse. I can’t tell you how many times that has happened and then a half hour later, I come upstairs to see my child spitting up blood. When that happens, I feel guilty as hell. I’ve treated her just like everyone else. I didn’t believe her. I even blamed her for not being able to go.
We need to stop blaming kids for their pain.
Pain is real and in the case of my child, she has a number of conditions that cause her pain. While chronic pain does change the neurological system, causing it to misfire (the basis of her AMPS diagnosis), the fact remains that what she is feeling physically is 110 percent real and it’s not her fault. Instead of adding to the burden by blaming everything on pain, doctors need to be more compassionate, responsive and listen. They need to treat her like she matters and not provide a “one treatment fits all” approach. Especially when she doesn’t neatly fit into the diagnosis box.
Children should never feel guilty or bad about the way they feel. It’s hard enough to deal with pain and illness on a daily basis. It’s not their fault and they should not only be treated like they matter, they should get the same care as their adult counterparts. It’s not their fault.
If you have a child with chronic pain, the US Pain Foundation is looking for Pediatric Pain Warriors to help educate others about pediatric pain. We make a difference advocating for our children every single day. Have them reach out and make a difference in the life of others.
Follow this journey on It’s Me Deb CB.
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