The First Diagnosis: The Beginning Of It All

I wasn’t always a zebra. Well, maybe I was. But it wasn’t always apparent to me, or to the medical community. It was a while before I got my first diagnosis as a zebra. So where did it all begin? Well, I’m honestly not sure. Looking back on things with 20/20 hindsight, I can trace key symptoms back to my early childhood.

So How Did It All Start?

It was my freshman year of college. More and more, I was finding myself dealing with a fatigue unlike any I’d experienced before. This wasn’t a depression fatigue. This was… different. My joints pretty much always felt like they were on fire. Headaches and migraines had gone from a regular thing to a near-constant thing. My hearing and eyesight had a marked drop, and my comprehension and memory declined dramatically.

Over the course of my freshman year, I ended up in the local emergency room close to a dozen times. I was on a first-name basis with several of the nurses who usually worked the night shift. I still know my way around the hospital in the town I went to school in better than I know most of the buildings on the campus.

The doctors didn’t make it easy for me, though. No one wanted to look Big Picture. No one wanted to make that first diagnosis. It was always a case of “let’s look at the single symptom presenting and treat it as an isolated case.” The hospital had extensive charts on me; the doctors could see I’d been coming in for a wide variety of things.

But if anything, that made them more determined not to treat me. I was told more times than I can remember that a symptom wasn’t possible. Or that I was too young to be experiencing what I was. Or my personal favorite, that it was just conversion disorder. For those of you who aren’t familiar with conversion disorder, it’s when your anxiety tricks your brain into thinking there’s a specific physical symptom ailing you.

Imagine being a scared 18-year-old, in and out of the hospital multiple times every month, knowing that something is wrong with you, and being told almost every time that what you’re experiencing isn’t real. You know your body, and you can tell that it’s trying to tell you that something isn’t right. But no one will listen.

So Then What?

Because the doctors are telling you your symptoms aren’t real or that what you’re experiencing isn’t possible because XYZ, your mental health starts to go into a decline. You start to struggle in school. And because you have no diagnoses to work off of, you can’t get the accommodations you need, and professors start to think you’re lazy, rather than that you’re sick.

The first year of college is hard for anyone. But it’s nearly impossible for an undiagnosed zebra. Looking back, I’m still not sure how I got through my time at college. Probably mostly spite and stubbornness.

How Did I Get My First Diagnosis?

Honestly, I got lucky. One of the doctors at the school’s health center believed me and fought for me. It got to the point where the only person on campus I was closer to than the doctor was the girl I was dating at the time. That was no surprise, though, seeing as I was in the health center with something new or as a follow-up from yet another ER visit at least once a week.

But this doctor believed me that there was something going on. She didn’t know what it was or why any of my symptoms were happening, but she believed me.

I ended up spending a total of five and a half years at school before I went on indefinite medical leave. And in that time, it took four years to finally find my first diagnosis.

About three and a half years in, it just got to the point where my doctor was looking at my running list of what was at that point 17 diagnoses. She came to the logical conclusion that it was much more likely I had 1 or 2 unusual issues causing all my symptoms, rather than 17 individual diagnoses. Especially considering I was ending up with a respiratory infection every other week that had a tendency to turn into bronchitis or even pneumonia if not treated very aggressively right away. And no, I’m not exaggerating how often I was getting sick. There was a 3-ish year period where I was sick more than I was healthy by a wide margin.

So she and I started on a quest to find a brilliant doctor who specialized in the weird.

Enter My Old Therapist.

A close friend of his was a neurologist who specialized in zebra diagnoses. This neurologist is in very high demand and sees people from all over the country. So it was going to be quite a long wait to get in to see him.

Thankfully, as I said, my therapist at the time was a close friend of his and was able to get me in sooner.

So I went to the neurologist. He ran a whole battery of new tests. Some I’d had before. Some I hadn’t. Others I’d never even heard of. And he listened when I told him what I was experiencing. He asked questions. He helped me realize that a number of things I didn’t even know were symptoms were, in fact, and weren’t things that humans are just supposed to experience.

The test results came back in and definitively showed that I have common variable immunodeficiency and that I have Sjrogren’s-like dysautonomia (it’s not quite Sjrogren’s, but that’s the Official Form Of Dysautonomia it’s closest to. One great thing about my neurologist is he recognizes people aren’t walking medical textbooks and sometimes (read as: usually) people aren’t going to line up 100% with a diagnosis, and that that doesn’t mean you should automatically discount the diagnosis).

When I got that first diagnosis, I nearly cried. Here I was, 23 at that point, being shown indisputable medical test results that showed that without a doubt these were what I had. That it wasn’t all in my head. That it wasn’t over a dozen different issues. It was all just two issues causing everything.

It would be over a year before I was able to start treatment for diagnoses due to issues with insurance companies, but it was still a start.

Some Things We Learned To Connect To My Childhood.

For instance, apparently most people don’t live with chronic migraines that have no apparent cause and are resistant to treatment. Most people don’t have near-constant headaches. Most people don’t injure their joints as easily as a hot knife cuts through warm butter.

If we were to trace all my symptoms back, we could probably see that I’ve had some of my symptoms since at least Kindergarten. Most didn’t start to manifest until the end of junior high school or high school. But it wasn’t until college when it all started to reach that critical mass.

How Can You Get That First Diagnosis You Need?

It’s tough. When our health is that poor, we don’t always have the energy to advocate for ourselves. We don’t have the energy to make half a dozen phone calls to as many specialists every day. We don’t have the energy to fight, to keep going.

And that’s okay. You’re not in this fight alone. Especially if you’re like me, and get lucky with an incredible primary care doctor who’s willing to play QB for you and do a good chunk of the heavy lifting. It isn’t easy to find a doctor like that, though.

So what can you do?

Remind yourself that you’re not a burden. There are people in your lives- friends, family, teachers, doctors- who are there, who want to help you, who want to see you succeed. It’s okay to lean on someone else when you need to catch your breath.

You are important. You matter. And you can win this fight, too. So just keep going. You can get that first diagnosis.

Until next time.

-Nick



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