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Living with an Undiagnosed Disease

Updated: Sep 1, 2020

What does it look like to live with an undiagnosed disease?

- It looks like having a list of symptoms as long as my arm that I have to keep track of regularly and take to every doctor's appointment.

- It means countless hours of research.

- It looks like joining support and informational Facebook groups for a whole host of different diseases and disorders you might have so you can continue gathering information and comparing notes.

- It means having to remind yourself to trust your body and know you’re not crazy All. The. Time.

- It’s spending painful amounts of time on the phone tracking down medical records, making appointments, coordinating doctors and making sure everyone is communicating with each other.

- It’s a medicine cabinet stocked full of drugs you never take and oh yeah, none of them work, that’s why you never take them.

- It’s forcing doctors to do more than treat symptoms.

- It’s living with a chronic disease of some sort, but not having a name for it, and as such, not knowing how to manage it properly and in turn, feeling like it has more control over you than you have over it.

- It’s never knowing how you’re going to feel on any given day, regardless of how well you’re taking care of yourself.

- It’s having to constantly talk yourself out of this somehow being your fault.

- It’s getting brave enough to be demanding with your doctors and not backing down, even when you’re exhausted and your body hurts, which is basically all the time.

- It’s belonging to those Facebook communities but not really belonging because you don’t know that you have what they have. It’s not that you want to have what they have, you just want an answer. You want a treatment plan. You want some semblance of control.

I distinctly remember sitting across from my orthopedic surgeon as he showed my mom and I my hip x-rays in 2018. He pointed out where all my cartilage was gone, where a cyst had formed, a bone spur somewhere else. He then moved to my right hip and showed how much the cartilage over there had already worn away as well. It wouldn’t be long before it was in as bad of shape as my left.

“Is it hip dysplasia?” I asked him.

“No. It’s not hip dysplasia. With hip dysplasia, the joint typically wears out in one area, where, as you can see here, your entire joint has worn out.”

“So… why is this happening?”

“I couldn’t say. Could just be the way you’re built.”

That was it. I didn’t push any further at the time. I just didn’t want to be in pain any more. I wanted to be able to walk without crutches again and I thought after my hips were fixed, everything would be fine.

I’ve since found out they left “hip dysplasia” in my medical file, despite my not having it, which has succeeded in complicating my diagnosis process. I also found out they didn’t send my joints off to pathology after removing them. Something about “standard protocol.” But, if you ask me, considering only 1-2% of total hip replacement recipients are 35 or younger, you’d think it would be standard to run a damn pathology report on the deteriorated joints you know, just to be safe.

The really unfortunate thing is, my battle didn’t end once my hips were replaced, if anything, it was only the beginning. Since then they’ve found degenerative arthritis in my spine. I’ve been in the ER for severe chest pain (for the 2nd time in my life), I suddenly developed Raynaud's syndrome, and as of the beginning of February, some kind of headache disorder that had me hospitalized for 16 days and continues to plague me every single day as we speak… and that’s not even everything.

What’s really interesting, I have an aunt with Rheumatoid Arthritis. She presented differently than average in that it started in her hips when she was in her early-mid 30’s, it didn’t show up prevalently in her blood work and she hasn’t dealt with the mangled hands or feet. It took her 7 doctors before she was finally diagnosed. She also happens to have a headache condition she eventually developed and has endometriosis too. The medical parallels between us are uncanny.

My doctor has been running Rheumatoid Factor tests on me yearly since 2018. This year, it started registering as “weakly positive,” but my other inflammatory markers are still coming back as normal. To be honest, if you look at my blood work, I look like a vision of health. Isn’t that just the way? “But you look healthy!”

Living with an undiagnosed disease is like fighting a constantly uphill battle. It’s trial and error. It’s left me feeling like I need an assistant just to help me manage and keep track of it all on multiple occasions.

Last week I was able to track down my initial hip x-rays from 2014. This is a big deal because it should put to rest this hip dysplasia nonsense and help us build a case for whatever comes next. It will hopefully give my doctors another clue as to what happened and where to go from here.

The fear I live with is that whatever happened to my hips can happen to any other joint in my body, and is already happening to my spine, which cannot be replaced. Without interference, I worry about what irreversible damage is being done. That is what keeps me motivated to continue seeking answers and fiercely advocating for myself.

I also have to believe that somehow, I won’t have to live with a headache every day of my life for the rest of forever. That I’ll be able to lead a more “normal” life with the energy levels of a typical healthy 32-year-old. I want to feel good. I know it’s unrealistic to think there’s a cure or there’s something I can do to “fix” it all, but I’d be happy as a clam to simply know what I’m dealing with and have a functional treatment plan.

We have a long way to go with diagnostic medicine. Right now, it leaves much to be desired for those of us living between the lines - the Zebras, if you will. I realize it’s not an easy job to be a doctor, with thousands and thousands of diseases and not nearly as many symptoms, I can only imagine how often it feels like taking a shot in the dark. But far too often we, as patients, are not being listened to thoroughly. We’re being brushed off. Important pieces of the puzzle are falling through the cracks and as if that’s not bad enough, we’re at the mercy of insurance companies, what doctors they say we have access to and what meds they say we have to try in what order.

There is very likely a doctor out there who could crack my case in a matter of hours, okay maybe days. How do I find them? How do I pay for them? Why is it that I go into my doctors appointments feeling like I know more than my doctors half the time? I don’t want to feel like I’m on a level playing field with my doctors. I didn’t go to med school. This isn’t my arena. I want to go in there and feel like they have my back and are highly capable of getting to the bottom of what’s wreaking havoc on my body.

Right now, my doctor and I are discussing getting me into the Mayo Clinic. It’s probably the next best thing to do. Of course much of that will depend on whether or not we can build a strong enough case to get my insurance to cover it. I’d also be lying if I said it didn’t scare me a little. I’m afraid to keep hearing “We don’t know.”

Despite knowing what it feels like to live inside my body every day, when you don’t have a diagnosis, there’s always a seed of doubt, albeit the size of a mustard seed, it still lingers. I still have to acknowledge it regularly and remind myself that it also used to creep into my mind while my hips were deteriorating and it was wrong about that too. I can’t let it win again. I’ve been down that road once and I refuse to go down it again.

This is the ultimate practice in trusting the Knowing. It’s the ultimate practice in trusting my body to tell me what’s wrong and what it needs. I spent long enough not listening. I deserve more from myself.

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