Are you feeling inadequate due to PH? Fear not, you’re not alone

Inadequate. Weak. Useless.

When we’re battling chronic illnesses like pulmonary hypertension (PH) and are forced to endure chronic pain, emotions like these can easily overwhelm us. It’s no wonder we feel useless or “less than” in such circumstances. We often define ourselves by what we do, and when we’re sick, it’s hard to be productive.

Being unable to live up to our expectations for ourselves can turn our world upside down and negatively affect our mental health. We get caught repeating the motto of a late “PHriend” of mine, Lisa, who always used to remark, “Fake it until we make it!”

Here’s the thing: If you’ve ever attempted to fake being well, you’ve probably realized that the cost is too high and the payoff isn’t worth it.

Recommended Reading

March 22, 2023 Columns by Jen Cueva

Before you try to help someone with PH, know the dos and don’ts

Pat yourself on the back

If you’ve come to terms with the fact that something has to give, take a moment to give yourself a round of applause. Once we acknowledge this difficult truth about managing complex diseases like PH, it forces us to reframe how we see ourselves and navigate life.

When PH makes us feel useless, inadequate, or unworthy, it’s not because we actually are those things. It’s because each one of us has a purpose driving us to take action. We take care of our families, contribute to our communities, and showcase our talents in the workplace. And, of course, we know we must care for ourselves, including the mind, body, and spirit.

So many unanswered questions

When we’re confronted with the reality that we can no longer do the things we used to do, we must wrestle with unanswered questions: Why did this happen to me? Why can’t I keep up with my family? Will I ever be able to go back to work? How am I supposed to manage all of this pain and fatigue? Am I just being lazy or weak? Will I be around to see my grandchildren?

These concerns are valid. Feeling frustrated, frightened, angry, or guilty about our limitations is normal. But PH doesn’t make us less capable or less worthy of living a fulfilling, purpose-driven life.

Choose to thrive

Those who experience daily health challenges often possess the greatest strength and resilience. We continue to show up for our loved ones, pursue our passions, and find ways to adapt and thrive.

So let’s shift our perspective about rare diseases. Instead of seeing them as a burden holding us back, let’s view them as a part of who we are. Accepting and embracing our limitations may be difficult, but it can bring peace of mind and self-compassion. I’ve learned this the hard way, and it’s still a work in progress.

We can also master the art of harnessing our energy and maximizing the potential of our good days. This involves being fully present, allocating our time appropriately and confidently, and establishing healthy boundaries when necessary. I’ve been diligently cultivating this skill for years, with guidance from my mental health therapist. As with everything else, the more we do it, the better we become.

I now realize the power of saying no to activities or tasks that deplete my limited energy. This is crucial for those of us with PH, because even mundane tasks like doing the laundry or taking a shower can leave us utterly drained.

Seeking support from loved ones or joining online support communities with people who share similar experiences can offer a sense of understanding and connection, too. We don’t have to go through this alone.

Remember, our worth isn’t defined by what we can or cannot physically do.

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.