On Being Ill: The Art of Misdiagnosis

I was first diagnosed with Systemic Lupus Erythematosus (SLE) at the age of twelve. My mother sat next to me in the doctor’s office when we finally received the diagnosis. It was as if I had been drowning for years and my lungs had forgotten how much they loved the taste of air: I could finally breathe.

SLE is a disease that causes the body’s immune system to mistakenly attack healthy tissue. Symptoms can be so diverse that the disease is incredibly challenging to diagnose. While I can never be certain which symptoms related to my illness, I suffered from gastrointestinal issues, joint pains, unusual rashes, and neurological issues my entire childhood. I had seen more specialists than most people will see in their lifetime and underwent a variety of different procedures whereby most were inconclusive. I only had my symptoms which were oftentimes invisible to those around me.

And then, I was referred to a psychiatrist to evaluate my mental state: ‘she has pediatric depression’, they told my parents and claimed that I was creating injuries for attention but there was absolutely nothing physically wrong. A second psychiatrist stated I was psychosomatic, whereby a mental factor such as anxiety or depression causes a physical illness.

I was too naïve to be depressed and had never really concerned myself with any business that caused any kind of harm but I would convince myself that maybe I was ill. I didn’t want to simply reject the diagnosis of the psychiatrists, so I began to think that maybe I was so mentally ill, that I myself couldn’t even recognize it. It didn’t feel true, but the truth is often counterintuitive and so I had to believe that he was right.

As years passed by, my symptoms only increased in severity. By my eleventh year, I had already been receiving treatment for a stomach ulcer; I had to avidly avoid the sun as I would break into painful rashes all over my skin; my fingers and hands had swollen to triple their size at the joints, and my right elbow had locked and permanently folded. I would be dreading gym class as I would be pushed and tested on the level of pain I could only attempt to tolerate.

I can only continue to be thankful for my parents and the doctors who persisted in achieving my final diagnosis. It wasn’t until a blood test performed by my GI, had returned with a positive ANA that I was reassigned to a rheumatologist who had seen my symptoms before in other patients.

And for the first time, I wasn’t crazy.

Within a few days, I began to receive treatments to maintain my illness. My elbow was treated for rheumatoid arthritis with cortisol injections in my joint and my other symptoms began to vanish with the help of steroid creams and prednisone.

It’s striking to me now how difficult it was to be taken seriously, but in fact, 45% of patients who are eventually diagnosed with a recognized autoimmune disease are originally diagnosed with a psychological disorder. (Brea, 2017) Through the years, I have had doctors dismiss my disease claiming that SLE is a term that states: ‘we don’t know what you have’. I have had people claim that I am constantly seeking attention by claiming symptoms of this invisible illness.

I have been dismissed so often, that I no longer discuss my disease.

With this blog, I’m going to create a community to learn about invisible illness and how it can affect so many people on a day to day basis or else I want to reach out to those who suffer in silence for reasons such as this. While some posts will focus on being ill, I also look forward to sharing my modelling career and some of the incredible artists I have had the opportunity to work with.

Thank you so much for taking interest in my story!

Photographed by Tavo Arana Photography

References:

Brea, J. (Director & Producer). (2017) Unrest [Documentary]

9 thoughts on “On Being Ill: The Art of Misdiagnosis”

  1. Your strength and courage through all your hardships have made you one of the most amazing people I know! I am so incredibly proud of you for putting yourself out there and helping what I am sure will be so many people suffering in silence ❤

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  2. Such a moving read. I’m so lucky to have met such a strong woman like you, Dom. It’s not easy being this open and honest, you’re undeniably courageous. I look forward to more blog posts in the future.

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  3. I resonate with almost everything in this post. Thank you so much for sharing! I have many posts about coping with these types of things that you may be interested in. I look forward to reading more of your posts and beating Lupus together! We’ve got this, stay strong!

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      1. I know, it’s so ironic! But at the same time its a good thing because we can help each other! There are so many people on WordPress in the same boat as us. It’s really such a great community because we’re all here for each other and cheering each other on. And yeah, I’ve become really strict to what I allow in my body after being on dozens of different medications. Now I make sure I know and understand each medication I am told I should take to make sure it will not make my symptoms worse. The sad thing is that most medications do. I am happy you will be looking into this more!

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