Reminding Myself That I Am So Much More Than PH

Hey, y’all, I’m Jen.

I love people. I enjoy talking, writing, and cooking. Coffee shops and food are my jam. I admire my family and friends. Listening to live music or being near the water helps keep me balanced.

But pulmonary hypertension (PH) will creep up when least expected, attempting to steal my identity.

If you also live with chronic illness, do you find that others define you by it? I’m often reminding myself and others that I am much more than PH. Unfortunately, the symptoms and limitations that come with my condition do, at times, take over.

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This identity crisis is all too common for many of us in the rare disease community. For example, I write this column about my experiences with PH, moderate the PH News Forums, and do advocacy work for the Pulmonary Hypertension Association. I am a writer and an advocate.

It is common for patients, especially those newly diagnosed, to become inundated with PH. They likely did numerous diagnostic tests and saw multiple specialists before they even received an accurate diagnosis.

It’s easy to imagine how this can cloud the way we define ourselves. But despite PH, we all have a purpose and a plan. Those of us with PH are so much more than the disease. I need this gentle reminder at times.

I get it — it’s not easy when we’re tethered to 50-foot-long oxygen tubing every day. Worrying about our health and medication refills is part of our daily routine. But for me, this is only a tiny portion of my day.

There is much more to me than PH. I am a woman, wife, mother, daughter, friend, colleague, and nurse.

Those of us with PH are like everyone else, with some added struggles. We are not weak or lazy, we are PHighters.

Occasionally, I face this internal battle of defining myself apart from PH. After 16 years, PH has changed me in profound ways. Still, I’ve maintained many qualities that describe me. So have you.

Struggling with identity can be worse when PH symptoms are exacerbated. When I’m dealing with extreme shortness of breath, chest pain and tightness, and fatigue, it’s easy to feel like PH defines me.

With an added punch of uncontrollable side effects from PH treatments, the struggle intensifies. At my worst, I remind myself that PH is only a tiny part of my life. I will get through the crisis and back to my norm.

I’ve found that I occasionally need to take a break from the PH world. This does not mean that I’m not dealing with symptoms or side effects. It means I’m taking a break from social media, forums, and emails. I tend to set my phone on silent and leave my emails unanswered. Unplugging from my electronic gadgets offers me time to rest and reset.

Those within the PH community may feel guilty when taking these breaks. But it’s important to our psyche to unplug and be in the moment. The emails, calls, and updates can wait.

We must continue to support each other as we PHight through our most challenging days. Don’t lose yourself as you are consumed with all things PH.

How do you define yourself apart from PH? Please share in the comments below.

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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.

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