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long path of doctors shrugging

An Introduction To Me & My Wild, Decade-Long Diagnosis Story

A few days ago, an anthology of essays on anger, called Burn It Down, was published. An essay of mine was selected for inclusion — can you guess the topic? Yep, chronic illness. Because I have lived with anger surround my daily life with ankylosing spondylitis and I’m angry that it took so long to even get the diagnosis.

My rage is necessary

And while I know that finding both true acceptance and peace are important aspects of juggling an illness like ankylosing spondylitis, a little rage here and there can catapult you. To better advocate for yourself. To be more empathic toward others. To demand change.

It started at the eye doctor’s

The anger started about a decade ago when I was sent out of an eye doctor’s office with the diagnosis of “contact irritation.” I explained to the doctor that my eye — which looked swollen and red — felt like it was both on fire and also being punched by an invisible hand. It was uveitis, but the doctor was too lazy to ask the hard questions. He thought I was exaggerating my pain. You know the feeling.

It took me an optometrist, an ophthalmologist, and the team at a famous eye hospital before anyone thought to run a blood test or ask, “Is this systemic?”

Finally, an x-ray

Once they saw that it was uveitis, they ended up testing me for HLA-B27. It turns out I was positive for the gene marker, but my spine showed no evidence for AS. It took about a decade of aches and pains — and doctors sort of shrugging at my symptoms — before I was finally referred to a rheumatologist. An x-ray, finally, found evidence of spondylitis in 2017. Nearly a decade after my first symptoms.

I was mostly frustrated by the fact that doctors refused to refer me to a rheumatologist until I continued complaining. It took me annoying my doctor before he validated that I wasn’t simply hysterical or annoying. And the proof is in the pudding: Patients with chronic pain — especially women — are routinely ignored or diminished.

Then medicines

In 2017, I was put on Humira. I remember sobbing in the doctor’s office, my hands trembling as they administered my first injection. I kept thinking, Is this my life now? Am I just going to be a sick person forever? I was frightened of the side effects of biologics, but my doctors said it was better to start medicine now so that I wouldn’t lose mobility. I was only 32.

But they made me sick

Unfortunately, because Humira is an immunosuppressant, I got pretty sick. First, I had the shingles (do you know what it’s like to be set on fire, punched, and then cut into pieces all at once? That’s the shingles. Fun!) and then I had several lung infections. My doctor pulled me off the stuff.

Ever since, I’ve been managing pain with a three-fold system that, since 2017, has helped my pain and fatigue levels tremendously. I don’t think of it as a cure nor a system that will work for everyone (since we all manage our AS in our own unique wats), but it works for me. I get adequate exercise (mostly in water). I get enough sleep (at least eight hours). And I manage my stress levels.

The maintenance never ends

This is a constant process of up-keep (a lot of rest, meditation, stretching during the day, and breathing techniques when I get overwhelmed) because I work as a busy writer, I live in NYC, and I’m often very busy. I’ve had to sacrifice a lot — including a job that paid well — in order to freelance at home to limit my stress levels and reduce my energy output. I wake up everyday thinking, “Will the other shoe drop?” It hasn’t, but I hope it won’t. Freelancing, thus far, has been working — and I’m not sure I’d be given the chance to be my own boss had I not gotten sick. #SilverLining?

I also use diclofenac, an anti-inflammatory, regularly. I know that one day, things may get worse and that I’ll need to change my care regimen. I know that I’ll have to make more sacrifices, and I know that there’s a chance that I won’t always have the level of mobility and energy I currently do. As with most chronic illnesses, AS means one day I look and feel fine, while the next day I look terrible and feel even worse. Sometimes you can’t see how bad I feel. I know you all understand that.

AS makes relationships hard

AS has taken a bite out of my relationships (I often cancel or refuse plans with friends). It’s made it so that my working opportunities are limited (I can’t do a standard 9-5 with a hefty commute these days; this particular schedule seems to keep me in flare-up mode).

My heart goes out to everyone who has to contort themselves — metaphorically and literally — every single day simply to make ends meet. My heart goes out to those who suffer from chronic pain without proper support or access to resources. My heart goes out to everyone who spends time wondering what this rampant inflammation will eventually end up doing to our bodies.

But we’re in this together

I see you. But I also know we’ve got to stick together through this — so I’m happy to be a new part of the AnkylosingSpondylitis.Net team as a writer, moderator, and AS patient. I’m always here to chat. You can find me on social media everywhere @lisamariebasile.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lawrence "Rick" Phillips moderator
    2 weeks ago

    Hokie smokes, that is an odyssey. I am glad you have discovered a course of action that seems to help. I also hope you will ask your doctor once again about immuno suppressants. There are more available to day and while I do not know anyone who has had success with all of them, I also do not know anyone who has failed them all.

    Even if they all fail, at least you have a something that works and that far beats nothing at all.

    rick – moderator

  • Auldyn Matthews-McGee moderator
    2 weeks ago

    Wow @lisamariebasile what a journey you’ve been on. I saw a post on the site recently that said the average time to diagnosis is 7-12 years. I can’t believe that. The time it takes for patients to push and advocate for themselves is so long. I’m so amazed at each one of you who persist.

    My husband is the one with AS and it took 7 years. He was diagnosed at 24 and had a very similar experience. “You’re tall. You’re stiff. That’s just who you are.” Pain became his identity.

    Have you ended up trying any other medicines? I’m always curious to see what happens. My husband went on Humira not too long ago and I’m hoping it aids him for a while.

    All my best,

    Auldyn

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