Isn't Puberty Bad Enough? (or Getting Diagnosed with a Chronic Illness as a Teenager)

Looking back, I can never really think of a time when I wasn't experiencing some level of wide-spread pain or fatigue.  Even as a young child, I was sick.  A lot.  I came down with sinus infections every other month, it seemed, or respiratory issues that would quickly morph into pneumonia or bronchitis.  For many years I didn't even realize my pediatrician's office had a waiting room because I was always ushered through the door they used for emergency appointments.

But I became a pro at swallowing pills.  (Please note, this isn't something of which someone should be proud.)  Amoxicillin was frequently part of my daily ritual, along with other medications used to treat respiratory issues.  I became familiar with the route from the doctor's office to radiology and back, and knew exactly where the cafeteria was in the hospital.  I was a frequent visitor.  (In truth, all of this time spent around medical professionals inspired a love of medicine and health.  To this day, I love being on a major university hospital's campus...as long as I don't have to be the patient.)

As I grew older, my family and I became practiced at the rituals.  At the first sign of anything sinus or lung related, off to the doctor I'd go.  It hit a point where we could just call in that I was coming down with something, and the doctor's office would call in a prescription.  This was all during the time when doctors prescribed antibiotics for everything. (It was a few years after my diagnosis of Fibromyalgia that a doctor told us that there's a fairly good chance that it was the high utilization of antibiotics throughout my childhood that led to my development of autoimmune disease.)  

As I entered my teenage years, I started having lots of pain in my knees.  I can't really pinpoint feeling the achy pain that frequently is associated with Fibromyalgia, although I know I was experiencing that constantly (along with fever, so we continued to believe it was just an acute illness.)  The problem was that none of the doctors I saw could find anything "wrong" with me.  The blood tests were normal.  

Throughout this time, I became severely depressed.  I was experiencing the mood swings of puberty and hormonal changes along with not feeling well and dealing with constant pain.  A frequent refrain from the multiple doctors included the statement "We can't find anything physically wrong; here's a referral to a counselor."  And I saw the therapists.  (And incidentally, I was probably the kind of teenage client that most therapists hate to treat.) But while I wound up with a diagnosis of clinical depression, it still didn't help with the physical pain or fatigue that I was experiencing.

My mom deals with chronic pain and multiple chronic illnesses and has since I was a child, so she wasn't afraid to continue to be an advocate for me.  I'm grateful for that example because it 1) got me a diagnosis and we were able to start treatment and 2) taught me to advocate for myself and others.  When I was 15 we were finally referred to a Rheumatologist who ran more tests and came to the conclusion that I had Fibromyalgia Syndrome.  I remember the doctor telling us a bit about it--what was known about it 20+ years ago--and adding the statement "We've really only seen this in women in their 40's and 50's."

I was 15 years old.

At the time, there weren't a huge amount of treatment options known to help Fibro.  I was placed on a prescription of Naproxen Sodium (now known as "Aleve", but it wasn't available over the counter at that point.)  A few months later, I was having an Upper GI Series because it had given me an ulcer. (Sidenote:  Barium milkshake will never be a "flavor of the month" milkshake.)  Next on the lineup was one of the older anti-depressants that they still occasionally use for treatment, and it was successful...for a while.  (I'm still trying to lose the 60 lbs I gained while on that medication.)

But in the midst of the doctors appointments and physical therapy and knee braces and medications, I was still a teenager trying to get through high school.  Finding the energy to do all of the normal teenage things like go to a dance or the football game or spend hours on the phone with friends took a toll on me.  I wanted to be a "normal" teen, because really, who doesn't?  Being different during adolescence is not something most people strive for. But I had joints and muscles that ached and wouldn't cooperate when trying to be active.  I had to deal with the side effects of the medications and missing school because of appointments.  I found myself really struggling at times to follow the teacher in class or to contribute to a conversation (due to the cognitive challenges that can be a frequent part of Fibro).  

Don't get me wrong; I've always been a fighter, and I wasn't going to let some chronic pain condition keep me from doing well in school or be competitive in public speaking or win medals in Science Olympiad.  But as I watched my group of friends around me (who were just freakin' brilliant), I felt like I had to push that much harder.  For the group of friends I was in, the peer pressure wasn't to party or do drugs; it was to read Gabriel Garcia Marquez and have hours-long conversations.  Even with my high grades, I felt like the dumb one of the group.  

The thing is, life doesn't stop when someone receives a diagnosis of chronic illness.  Yes, I suddenly found myself a "Fibromite", but I was still a teenager dealing with the social requirements of peer pressure and preparing for a good college.  I still had to deal with getting acne and first kisses and boyfriends.  And while starting treatment for the Fibro helped with the depression, it didn't make the depression disappear.  

I think high school was the first time that I learned how to wear the mask of a normal.  I could pretend that I wasn't in pain, that I wasn't exhausted, that I was struggling.  I learned how to cover up my FibroFog moments when I would lose words that I wanted to say.  I learned that focusing on other people and other things could be a great distraction.  (It would be a few years until I learned that there were times I had to focus on myself for my health or I would pay dearly for it.)  And behind the scenes, where only my family and I could see, could I let the mask down.  

At the time of diagnosis, I don't think I really understood what "lifelong" meant.  At 15, even 35 years old seems old, so the idea that I would be dealing with pain and fatigue for a really, really, really long time didn't really hit me until I was older.  But since I also don't remember a time without the pain and fatigue, it's something that's familiar to me. 

I have a vivid memory from that time, though.  I remember meeting a woman who was probably in her 40's who was using a wheelchair.  She and my mom were talking, and the topic of Fibromyalgia came up, and this woman shared with us that she too was a Fibromite. Her pain had become so severe that she had to use a wheelchair to get around.  I vowed to myself that I would do everything I could to make sure I never ended up in a wheelchair due to my Fibromyalgia.  Years later, I realize that there's no guarantees, and there are certainly worse things than being in a chair, but that moment was symbolic to me and it solidifies my attitude toward my pain to this day:  

• Movement and exercise (in moderation) is a good thing for chronic pain.  Yes, it hurts like hell in the beginning, but it helps immensely.
• Holistic treatments such as acupuncture, massage, yoga, and meditation are lifesavers--use them first, before the NSAIDS or even pain pills.
• Attitude really is everything.

For parents who have a child diagnosed, here are a few tips from someone who's been that kid:

• Don't be afraid to advocate for your child with the medical profession.  You're entitled to second opinions.  
• Educate yourself.  Organizations such as the National Fibromyalgia Association, the Arthritis Foundation , and the National Fibromyalgia and Chronic Pain Association are great resources.  If you or your child is struggling psychologically, check out the National Alliance on Mental Illness.
• Talk to your child's school and, if necessary, educate them.  It's within your rights to request any accommodations that will assist your child with learning.
• Counseling is a good thing for both you and your child.  Caregiver fatigue and burnout is a real thing, and you need support as well.  
• Laughter really is some of the best medicine out there.  Try not to focus on the negative or on the disease all of the time, but make sure you encourage your child to be a kid.
• And it's okay to ask for help.  Create a support network around you for support and venting, maybe even people who can give you a chance to take a break to care for yourself.  

Definitions of conditions listed in my medical chart