I had the most amazing discussion with my twelve year old daughter during the
last week of school. She asked to speak to me alone in the evening and said it
was important. When we finally had some privacy, she detailed a list of
troubling symptoms she had been experiencing.
“I don’t feel like myself these days. I’m not very hungry. I don’t get really
excited to be around my friends and I don’t seem to care what they are doing
and whether I’m included. I feel wound up inside – but slow on the outside. And
things are bothering me that I know shouldn’t….. Like my science teacher asked
me how I was doing, and I just broke down crying….. but I don’t even know why!
And I get scared for no reason…. Like last night when I woke you up because I
heard something outside… my mind knew it was just a cat, but I couldn’t stop
myself from thinking somebody was breaking in… and before long I could actually
hear the window opening and my heart was racing!!! I feel like things will
never be normal again….”
And just like that, my little girl put words to the overwhelming feeling that is
I tried to explain to Caitlin that there are lots of reasons she could be feeling
this way. Certainly being 12 has its challenges no matter what. Hormonal
changes at this age can drive anyone into feeling out of sorts. The upcoming
summer, with the end of the first year of middle school also causes a lot of
But the main reason, I told her, is PAIN. She is in pain every day. Most of the day
right now, unfortunately. “But it’s not like my knee hurts and somebody asks me
if I’m OK and I cry because it hurts” she answers. No, it’s not like that. I
wanted to convey to Caitlin that just getting through the normal business of
the day takes an enormous amount of extra energy when you are in pain – getting
out of bed, choosing what clothes will go on easily, trying to lift your hand
to brush your hair and teeth, forcing yourself to eat breakfast so you can take
your medicine, trying to bend over to slip on shoes… or even worse, to tie
them! All this before leaving the house. And then going to school and masking
your pain all day so people won’t stare, or mark you…. Walking from class to
class, writing, trying to keep up. I tried to use the spoon theory to explain to my daughter that pain causes her to “spend” so much of her energy just getting through, that her regular personality is drained, tired, overwhelmed. She is raw, and susceptible to
exaggeration, fear and irrational thoughts.
Many parents of children diagnosed with arthritis describe how their child’s
personality changes with the onset of the disease. A child that was once
playful, giggly and outgoing has become guarded, afraid and introverted. It’s
as if the child’s true self is hidden… cloaked and muffled under all the pain.
There is understandable fear of doctors, medicines, tests…. Uncertainty of the
future. But the great news is that getting the pain and the arthritis under
control can mean throwing off that cloak and a return to one’s “old self”.
But honestly, Caitlin was so young at diagnosis that the changes in her personality
were as gradual as the change in her height. It wasn’t so obvious that I could
see it clearly standing right in the middle of it. Perhaps she was less
gregarious, less likely to jump into a new situation…. But she’s always stayed
funny, playful, smart and shining. By last year though, the growth of her
anxiety was so enormous that we could not see anything else. It was full time
work to identify what we rationalized were the latest causes of the anxiety –
we hopped from one theory and treatment to another. I bought books that
instructed me to have Caitlin make lists of her worries so we could discuss
them and address “what’s the worst that can happen” so we could face those
fears head on. She learned that anxiety is a “bully” but she can be the boss!
We addressed sleep hygiene. Tried massage, acupressure, and acupuncture. I
practiced “sleep talking” in her ear while she slept. None of those things were
bad, and they all helped…. But the anxiety persisted.
We saw a therapist at the time – and I will admit I was open to medication if
that’s what she needed to feel better. Having your almost adolescent swim in
the murky waters of depression is very scary, and we certainly did not want her
to get deeper and deeper… But I was hoping that we would be able to find some
behavior modification techniques. I didn’t want to pile on another med right
away. The therapy was painful in its slow pace and seeming lack of progress.
There was an elephant in the room – this arthritis, this necessary hip
replacement surgery, this pending transition to middle school… and it seemed as
if the therapist encouraged my daughter to talk about anything else but the
obvious. She counseled me that I was being too aggressive… that I needed to be
patient. She suggested I read about how to raise an “emotionally intelligent”
child. OK… she probably had a point. When you spend 8 years frantically
searching for treatment for your child while you are fighting the ticking of
the clock that is counting down the permanent joint damage… yeah, I’ll admit to
being aggressive and quick. After four months, the doctor suggested that
Caitlin would need “pharmacological intervention” for the rest of her life to
have “emotional balance”. I replied that I didn’t believe the good doctor
understood what living with chronic pain was like, did not understand
arthritis, and still did not really know my daughter….and therefore was not
qualified to make that statement . That was our last visit.
After Caitlin’s hip replacement surgery – the cloak fell away immediately. The pain
was gone and Caitlin was back to her “old self”.
But it all had value didn’t it? Because without all of that drama… all of those
books and attempts… would my little girl be able to make the extremely grown up
identification of her feelings of anxiety? Would she have the strength to be
able to step back and examine her thoughts and feelings and try to take control
I wish I could say that she won’t have to worry about it as she grows up. I’m hoping
beyond hope that this new treatment will strip the cloak away again, so that my
little girl won’t have to struggle to keep her real self peeking out from
underneath the pain. But even if it doesn’t, I feel like she is growing able to
“deal”, becoming smarter and stronger and wiser. I feel that being able to see
the anxiety for what it is, she will know how to attack it, or overcome it… or
make peace with it… whatever will allow her to be what she wants to be and live
how she wants to live.