My daughter and I have been on a kick to get healthy this summer. It was working fairly well till my knee surgery last week, but that’s another story. Anyway, in discussing this with someone, they said, “What kind of sports does she like?” I replied that she can’t do most sports, and that’s when the lecture started. I heard all about the benefits of exercise for teenagers, and so forth, and I don’t disagree. I just wish this person had asked me “Why?”.
September is Chronic Pain Awareness month. In my house, though every day is about chronic pain awareness, and it’s because my daughter lives with it. My beautiful, red-headed, green-eyed teenage daughter has Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD).
RSD/CRPS is a chronic neuro-inflammatory disorder. It’s caused when the immune system and nervous system malfunction after a trauma. RSD/CRPS generally occurs after an injury, such as a sprain or break, or following surgery. For Caitlin, it was a simple bump in the arm in the bustling middle school hallway. The next morning, her arm hurt to move. Later that next day, the pain was spreading down her left side. By the next morning, her arm was blue and mottled, as if not getting enough blood or oxygen to the limb.
Her pediatrician was stumped and began ordering tests to rule out bone cancer and other possible explanations. Then came the referrals to numerous specialists. For the next several months, I watched my daughter suffer nightmarish pain, and I felt completely helpless. Laying in bed created excruciating pain. Showering or bathing was torture for her because of the water, soap, and washcloth against her skin. School became difficult and she missed weeks at a time. She cried all the time. So did I.
With RSD, the pain is caused when the nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale. Even the pain management specialists couldn’t give her any relief from the suffering. One night, out of sheer desperation, we went to the ER, where a morphine drip was started. Still, she cried because even having the sheet laid over top of her was more pain than she could bear. The most frustrating thing of all, though, was that I was trying to explain RSD/CRPS to the ER staff because they were not familiar with it.
Here’s my point: if you looked at my daughter, who is a high school Senior, you would see “normal”. You would see an outgoing young lady who makes straight A’s, plays percussion, and plans to go into the medical field. You would also see someone who didn’t always participate in P.E., though she looks “normal”. To some, she might appear lazy because she doesn’t do a lot of exercises.
Here’s what you wouldn’t see: 1) the countless trips to the acupuncturist where she spends 2 hours with more than 100 needles stuck in her body, just to get some pain relief; 2) the simple paper cut that can create so much pain in the left side of her body that she can’t sleep or function for weeks at a time; 3) the specialists at Children’s Hospital that oversee what she can and can’t do physically; 4) the fear that she hides because the long-term effects of this disorder can leave her crippled long before she reaches “old age”.
So, the next time that you look at someone who appears “normal”, stop to think that there might be more to them than you can see with your eyes. Maybe it’s RSD/CRPS, POTS, Fibromyalgia, neuropathy, PTSD, Anxiety, depression, or any number of other silent disorders that affect millions in this country. Stop to think that maybe, just maybe, their reality is different from yours. Then realize that a different reality isn’t a wrong reality. It’s just different.
Please think before you judge.