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The Hardest Part of Being Diagnosed With Chronic Illness as a Teenager

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Chronic illness is hard. There are many things that I would like to be doing that I can’t. The pain can be debilitating, the fatigue is less than ideal, and I’ve become way too accustomed to medication side effects. But the truth is, I’ve come to be accepting of the limitations that chronic illness places on me. Things are harder for me than they used to be, but that’s OK. What I assumed would be the hardest parts of my journey have become some of the simplest. Pain management, physical therapy, and mobility aids have not been my enemies. The real problem in this journey? The loss of my youth.

Getting diagnosed at 15 was conflicting. Like any other chronic illness patient, I had a hard time being taken seriously, even more so because of my age. There was a lot of blood work, a lot of trial and error, and a lot of tears. My weekdays soon became filled with doctor’s appointments, sometimes every day of the week, and my friends saw me less and less. When I finally received a diagnosis of fibromyalgia and chronic fatigue syndrome from my rheumatologist, it was relieving. I thought things could go back to normal. But unsurprisingly, they didn’t. Even though I had a base diagnosis, it was far from over. There was still the subject of medication, of therapy, and even further testing! In my future there would be even more strife. Specialists and physical therapy kept me booked, it was just like before.

Even when I didn’t have an appointment, I felt too drained to be around my friends. On the rare occasion I did go out, I was basically a dead weight. Everything felt like an obstacle – stairs, getting out of the car, even just walking through the mall. I watched them deal with my illness, from grimacing as they heard my bones pop to huffing as they had to wait for me to catch up to them. I could feel them growing tired of me, and they soon stopped asking me to tag along. When I eventually brought it up, a dear friend told me, “It’s not you, it’s your illness.” They meant no harm, but it still stung. I longed to make them see that I can no longer separate me and my illness. It’s a part of me, and unless I hold out for a magical fantasy cure, it isn’t going away. But it’s hard to explain that to someone when their biggest worries are their chemistry test or who’s coming to their party. Who am I to blame them? After all, I used to be that way, too. Staying up all night for fun turned into not sleeping because there was no relief from the pain. Waking up for school was now waking up for medication, then going back to sleep. Going out with my boyfriend meant staying in bed the next day, suffering the consequences it had on my body.

The loss of many of my friends was only the start. The stigma from doctors was only worse after my diagnosis. There were many who would reject my diagnosis and say I was too young. Specialists would refuse to see me because of my age. I had to pursue each symptom through a different doctor. It took a very long time, but I was finally given medication for the constant migraines, many of which were vomit-inducing. I openly sobbed after the appointment was over due to my eagerness for any sort of relief. Soon after, I received medication for nausea and for anxiety, and eventually some for pain. It was my own little victory. But I still found myself having to defend it.

My general practitioner was OK with my medication list, but other doctors were less accepting. Many refused to prescribe me anything else. Even my gynecologist tried to convince me to change my regimen. The most startling judgment, however, was coming from people who had no idea what I went through on a daily basis. Friends I hardly spoke to would tell me I was polluting my body with garbage, that all I needed to do was be positive. A relative told me just to go outside. The comment I heard the most, though, was that I was too young to be taking pills. Ironically, the pills were the only thing making me still feel young. I started to feel like I was trapped in a 70 year old body every time I heard my hip pop.

Admittedly, the pills did not fix everything and I did need extra help. I started using a cane. My first experiences were awkward. I tripped up, I got it caught in car doors, and I even fell on my face once or twice. After much practice, it became my best friend. I could walk long distances without severe pain. The lack of pressure stopped the joint from popping when I was walking. I could even sit down on my own! For a moment I forgot why I was ever hesitant to use it in the first place, but it did not take long for me to remember.

Before I used a cane, I could get by with being unnoticed in public. Now I was the subject of constant attention. There was constant staring, scoffing, and dirty looks. I couldn’t even get lunch without being watched. Going into stores meant for teenagers was hard, because I no longer looked like I fit in anymore. I stopped shopping for clothes when the manager of a local clothing outlet asked me if I had stole my cane from the pharmacy down the street. Every day, people would ask what was “wrong” with me. The answer was never satisfactory. I heard many microaggressions in return.

“But you don’t look sick,” I heard. “You’re too young to have joint pain. Wait until you’re my age.”

The worst was when a group of teenage girls, racing around in the power chairs of Walmart, stopped to laugh at me for using the manual wheelchair. At my age, it was better to be playing around with the mobility aids than to actually have to use them.

Most of these problems chronically ill people face regardless of age. There’s always doctors that don’t believe you, friends that don’t understand, and judgmental strangers. But somehow being younger just gives them that extra fuel. It doesn’t help getting to watch people your age do exciting things. I know there are many things I will never get to experience, like getting my driver’s license or going to prom.

Amusement parks and parties are not in my near future. I had to take time to mourn the exciting, rebellious teenager I could have been. Looking at it now, though, I have accepted it. I did not choose my chronic illness, but I can make the best of it. I don’t have to fully grow up yet. I can take selfies in waiting rooms and I can put stickers on my cane. These little acts of adolescence give me hope. What makes it the easiest is my support system. I am so, so lucky to have an amazing family and an understanding significant other. Seeing someone you love struggle hurts, but they have stuck by me. If it weren’t for them, it would have been a much harder journey. I’ve found I’m OK with being sick, because it’s given me a strength many people my age don’t have.

I’m different now, but I’m still me. That’s all that really matters anyway.

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Thinkstock Image By: maroznc

Originally published: June 26, 2017
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