Caregiver and Patient
Last updated: August 2022
I spent my life essentially being a patient. I was diagnosed with cystic fibrosis (CF) at age 12, after dealing with a difficult cough for almost two years. From there it was countless doctor appointments, with some hospitalizations mixed in with a focus on weight gain, lung health, and eventually blood sugar.
Love came around
Then I met a boy outside my high school college office, whom it turned out I had a class with. It was an instant connection and two years later, at eighteen and nineteen, we were married. He was one of the only people I’d ever told about my CF. He was accepting of it and the struggles that arose from it. Two months before my 20th birthday, we welcomed our first son into the world.
I absolutely loved motherhood from the first moments. I loved being pregnant, nursing him as a baby, watching him learn how to do things. I’ve loved watching him turn into the man he is becoming. We welcomed our second son three years later. They had such differing personalities and I loved it. My first son was calm and focused. My second child was creative and energetic. Both were wonderful students and sweet kids.
A struggle outside the norm
My oldest struggled at some point with facial tics and weak muscle tone but it wasn’t all that much to deal with. We took him to a few doctors who said he’d outgrow it. Shortly after, our youngest appeared to get tics as well. So, we already knew about the process.
His tics were more complex than my older son though. My older son mostly dealt with blinking tics while my youngest struggled with repeating words and sounds over and over as well as repetitive movements. He’d have to jump and skip a certain way when we were walking. I could give you full details on the struggles of CF but I’d never come across anything like this and so I didn’t know these were actually signs pointing at something bigger.
In his fifth-grade year, only a week or so in, he started struggling with homework. This was odd. This child was a gifted student. Everything just came naturally to him. As I was sitting down to help him one particularly frustrating night I noticed his paper was a mess. He’d erased so many times there were two holes in the paper. I honestly had no clue what was going on, but it quickly became a nightly ritual. Each time it became worse. He’d cry saying his letters and numbers were not good enough. Slowly, his tears turned into full blown panic attacks. I felt so lost.
It was only a week or two (although looking back it felt so much longer) of his constant erasing and panic attacks before I knew this was deeper than his need for perfect letters. The panic attacks were devastating. I’d wrap his little body in a blanket and just hold him until the shaking and panicked breathing slowed down. (This actually earned him the nick name - my baby burrito). Once things were calm again he’d immediately want to jump back into his homework. What used to take fifteen minutes had become a four or more hour ordeal. I contacted teachers to explain he was not slacking on his work. Something more was at play.
I did the research. Knowledge has always been power for me in understanding my own struggles… and these struggles were entirely foreign to me. After a three hour night of research as he lay sleeping beside me, I discovered an article on OCD (obsessive compulsive disorder).
As I spent the rest of that night diving through page after page of details, so many moments from his childhood suddenly became little warning signs I’d never known were there. His obsessive hours of lining up play cars in perfect lines. His obsession with me in earlier years that had him erupting in tears at the thought of leaving me (I’d always attributed that as a response to my hospitalizations). His routine patterns of sounds and movements. These were all signs of OCD. Like many others, I had always thought of hand washing or germ phobia when I heard the term OCD. I had no idea if it’s actual complexity.
Learning a new disorder.
This was all so new to me. Infections I could understand. Sickness I knew. The mental disorder plaguing my youngest son though - I didn’t know anything about it. So, I learned.
I learned that OCD isn’t just a disorder that makes people have an urge to do a repetitive action. It’s an illness so complex it convinces it’s host they will cause harm to themselves or others if it’s not done correctly. Crippling fear and anxiety. Most compulsions drive them to believe they’re failures because they cannot completely perfect their ritual. I slowly watched my vibrant, funny, full of life ten year old become a sullen, panicked, miserable child who hated himself. He’d cry himself to sleep so often I just moved him into my room and watched as he shook almost all night.
I have looked death in the face. I’ve been laid up in a hospital bed for weeks with IV’s hanging out of me. I have felt so exhausted the idea of doing anything seemed daunting. There have been so many frustrated moments due to feeling useless. Nothing prepared me for this though.
The weight of caretakers
I have more respect for CF caretakers than ever before. Going through it, as hard as it is, wasn’t anything as bad as watching my own child suffer. The devastating weight of watching someone you love hurting, really hurts. I felt so lost. I did not know how to help him. So, I researched his care options, and we went to appointment after appointment. There were meetings with teachers and the counselors. I researched successful treatments and joined support groups.
It’s been three years since his diagnosis and many ups and downs. The erasing compulsion eventually faded, to be replaced with other compulsions. Depression popped up and we do our best to not let it take over. We’ve learned ways to work with the “OCD monster” and ways to battle the thoughts he gets overrun by. There are coping mechanisms, medications, and therapy to help him. We’ve learned to not accommodate the negative impulses, but to face them head on. Some days are worse than others. Some moments I see glimpses of my happy, funny little boy and other days I see the pain in his eyes.
I admire my son for what he’s overcome.
I admire any parent or caregiver who has to watch someone they love battle an invisible monster.
I admire my CF caregivers just as much as I admire my CF fighters.
It isn’t easy to be on either side.
Have you participated in clinical or market research before?