When coexisting conditions complicate our health strategy

Comorbidity. Just seeing that word makes me cringe. It means having two or more coexisting, and often chronic, health conditions. For many of us in the rare disease community, comorbidity means additional struggles, headaches, and heartaches. Additionally, too often, comorbidities become a lens through which others see us.

Before my pulmonary hypertension (PH) diagnosis, I worked in the medical field. I enjoyed taking care of people and always strived to treat them with the same kindness and compassion I’d want my child to receive. ​Never once did I see a medical chart and not think of the person behind the words, someone facing things they’d never asked for.

​Nearly 12 years after my diagnosis, I see things differently. I often feel as though I’m seen as the sum of my medical record. And I see myself with limitations and comorbidities that define me. One of those is a “yet to be identified” form of diffuse systemic sclerosis.

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September 20, 2019 Columns by Jen Cueva

Coexisting Conditions Make Managing PH Even More Challenging

An expanding list of diagnoses

Scleroderma was added to my list of diagnoses a couple of years after my PH finally had a name. Its symptoms are intense. Changes in barometric pressure can make my bones feel as if they are going to implode. My digestive tract is significantly impacted. I sometimes have hyperpigmentation, hypopigmentation, joint stiffness, reduced mobility, and more.

When those of us with chronic health conditions have symptoms like this, we must allow our bodies time to rest and recover. Educating ourselves about the conditions and learning about medical options to help us cope is essential to our health. I’ve done that with PH, but I haven’t given scleroderma the same attention.

My family moved a year ago, and since then, I’ve been putting off getting a new rheumatologist, partially because I’ve been under the impression that there’s really nothing I can do, other than take my medication. This is partly because of the ambiguity of it all, as doctors’ opinions about my symptoms vary greatly. It’s also partly because I’ve had trouble accepting that I might have another life-altering disease.

Diffuse systemic sclerosis is no small thing. It’s a complex autoimmune disease that can affect every part of the body and damage multiple organs. It might even be contributing to my PH, but physicians have conflicting opinions about whether I actually have scleroderma. That has made it pretty easy for me to dismiss it.

Of course, we can ignore a disease, but that certainly doesn’t mean it doesn’t exist. My scleroderma has progressed, and the symptoms have worsened. I can’t deny it anymore. The earliest I can get in as a new patient is June, but that gives me time to learn more about the condition so that I can make informed decisions about my care.

I’m ready to fight this disease, and I’m doing what I should’ve done years ago: accept it, get educated about it, and advocate for the community.

Something I wrote was recently published on the Scleroderma Foundation’s “Scleroderma Truth” blog. I’m honored to have been asked to do that, and I consider it my official kick-off for scleroderma advocacy. I invite you to read it.

In the piece, I speak of accepting my diagnosis and moving forward. “Accepting my new reality gave me permission to be sick, to rest, to simply live in the body I have,” I wrote.

That hasn’t been easy for me, and I know I’m not alone in that struggle. But acknowledging my disease means that I’m going to help myself more. It’s strange how acceptance can be healing, both mentally and physically. That was unexpected.

Soon, I’m scheduled to walk into a new office to meet new people. I’m not thrilled about it, but it’s what I must do to get better. So I’ll go, reluctantly at first, but with any luck, I’ll come to look forward to my appointments because they’ll bring me better health.

I hope they’ll see me as an individual. I hope the rheumatologist will be involved in clinical trials and stay up to date on everything related to the disease. I hope he’ll have a great relationship with my PH specialist and primary care provider. I hope his staff will offer assurances that I can reach out to them with questions and for support and guidance.​

I wish for these things, just as I want them for all of us. Wouldn’t that be amazing?

We have numerous challenges to contend with in the PH community and the broader rare disease community. Wanting to be seen as a human being, and not just a diagnosis, medical chart, or specimen, shouldn’t be on that list. I wish they weren’t.

You can also follow me at Breathtaking Awareness.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.