4 things you might have noticed while living with PH
It may seem like you're alone in your PH experiences, but I understand
“The flower that blooms in adversity is the most rare and beautiful of all.” — Disney’s “Mulan”Â
Being diagnosed with pulmonary hypertension (PH) is a daunting experience, like stepping into uncharted territory without a map. Unlike more common conditions, there’s no simple guidebook for navigating this rare disease. Yet, as the “Mulan” quote teaches us, adversity can also reveal our inner strength and resilience.
Whether you’ve just received a PH diagnosis or have been living with the disease and its symptoms for a while, I’m sure you’ve had moments wondering whether you’re alone in your experiences. I’ve faced many challenges on my PH journey, and four takeaways stand out that you might relate to.
1. You’ll lose some friends.
It’s inevitable that some of our friends won’t know how to react after our diagnosis. They’ve probably never heard of PH before. While it hurts to lose friends, some of them are meant for certain seasons of our life.
During my “season of PH,” I’ve met new friends who want to learn about the disease and how they can support me. Those are the ones worth keeping around. They might not completely understand what I’m going through, but they try their best to stand by my side and help me.
2. You’ll think you’re going crazy.
Even if I tried, I couldn’t count the times I’ve been in this mood. Living with PH and coexisting conditions messes with your mind. It’s tough to tell if our minds are playing tricks on us or if it’s just our reality.
We might experience mood or energy swings that are way more intense than those of a healthy person. I’ve even penned a column about how living with PH sometimes feels like “riding the crazy train.”
3. You’ll feel pain and fatigue.
When I say I feel fatigued, it’s not the kind of thing a quick nap can fix. Just today, my husband, Manny, pointed out that my energy levels have plummeted recently, and I’m having more pain than usual. Manny is my partner and caregiver, and I know he worries when he sees changes like this. I try to brush it off, but he can see right through me. It’s challenging to explain to others how you can feel utterly exhausted and in pain without doing anything physically demanding.
4. It’s a constant battle with our bodies.
Living with PH means constantly battling our bodies. We need to continuously monitor our health and be aware of even the smallest symptom changes. This can be mentally and emotionally exhausting, as we’re always on high alert for any potential complications or a worsening of our condition. It’s a never-ending struggle, and it’s OK to truly feel the emotional toll of the battle.
Despite our best efforts, we’ll inevitably have setbacks. Some days, we’ll feel like we’re making progress with managing our health, only to feel like we’re suddenly starting over at square one. This can be discouraging and frustrating, but it’s important to remember that setbacks are a normal part of living with PH. It’s not a failure on our part, but simply a reality of this disease.
Remember that you’re doing your best. On tough days, let’s remind ourselves that a fresh start awaits us tomorrow. Like Mulan, we’re the rarest and most beautiful blooms. So chin up and keep blooming, my PHriends!
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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