Should you share your story of life with chronic illness?

A columnist explains the benefits of her willingness to be open about PH

Jen Cueva avatar

by Jen Cueva |

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Have you ever wondered why some people openly share their health struggles while others keep them to themselves? Before jumping to conclusions and assuming it’s all about seeking attention, let’s take a moment to reflect.

Speaking up about my chronic illness journey with pulmonary hypertension (PH) has given me valuable insight into the importance of empathy and understanding. On the road of dealing with illness, I’ve realized that some folks may feel uncomfortable or unsure about how to engage when the topic arises. That’s why it’s crucial to raise awareness and bridge the gap between those with disabilities or illnesses and those without. This allows space for a more inclusive and compassionate society.

Living with ailments that others might find uncomfortable to talk about can be challenging. However, by sharing our stories and experiences, we educate others about the realities we face daily, dispel misconceptions, and promote empathy.

Throughout this journey, I’ve noticed the incredible people who actively engage with my health-related posts and show interest in my other content. It’s essential to have a supportive network that acknowledges all aspects of our lives while understanding the significance of discussing our PH and other health concerns.

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Finding ways to maintain balance

Social media, much like other instantly gratifying activities, impacts the pleasure centers of our brains. This makes it challenging to abstain from constantly checking our social media profiles. To help resist the temptation, I’ve started using preventive measures like blocking access to certain apps and technology for certain amounts of time.

I’ve also recognized the importance of taking regular breaks, prioritizing my overall well-being, and cultivating a healthier relationship with social media and technology. This decision allows me to maintain balance and experience greater fulfillment in my digital interactions.

The first few days after a break are often interesting, and realizing the frequency that I used to check social media is eye-opening.

How sharing my PH journey benefits others

Social media has benefits, too, especially for those in the PH community. It allows us to bridge the distance and stay connected while cultivating relationships through technology like FaceTime and Zoom. Social media can bring us closer to others in our rare disease community.

I’ve had periods when I shared most of my health struggles and victories across these platforms. More recently, I’m in a season when I don’t share as much besides my columns each week. No hard rule says how much and how often we should share on these platforms.

Raising awareness about a rare illness is crucial to highlight the importance of early treatment. It entails educating healthy people about the challenges they might face in the future or if they are ignoring persistent symptoms now.

Advice from people who’ve experienced chronic illness can be helpful because patients understand firsthand how to manage and cope with their conditions. Connecting with my PH community has helped some reach an earlier diagnosis, and educate others about various treatments, potential complications, side effects, and how the disease impacts my life and the lives of my loved ones.

Many people wrongly assume that someone who appears healthy couldn’t possibly have a chronic illness. However, the reality is that many people have what is considered an “invisible” illness, with perhaps only subtle or periodic outward signs. That’s why communication is important.

As a patient advocate on social media over the years, I’ve received countless messages from people who have found solace in my words. They’ve expressed how my openness about life with PH has made them feel less alone. I vividly remember feeling this intense loneliness myself, so being able to help others avoid it is a powerful motivation to discuss my health openly. It’s my way of offering support and making others feel seen and heard.

Let’s talk and support one another throughout our journeys with PH and other rare diseases.

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.


Sally Hoffman avatar

Sally Hoffman

Reading this post made me realize I sounded somewhat one sided about my experience with Uptravi and weight loss. Please let me say Uptravi has been the best life changer for me since I was diagnosed with PAH. Any and all side effects I have suffered with Uptravi have been well worth the benefits.

Jen Cueva avatar

Jen Cueva

Hi Sally, no worries on your comments about Uptravi. We all understand that there are good and bad things usually from our treatments. But you shared that weight loss in a topic on the forums. I, too continue to have side effects with Uptravi but it's also been a great treatment in combo with my other PH meds.So, I relate!

Thank you for taking the time to read my column and then sharing your thoughts. My hope is that my readers find something relateable or new in every column I write.

Take care my dear PHriend.

MamaBear007 avatar


Jen, I loved this article. I share my son's story (never divulging his name, because he values his privacy) with anybody who I think can be helped.

Jen Cueva avatar

Jen Cueva

Awesome, MamaBear, I know so many , especially those with CTEPH benefit from you sharing your son's experiences with CTEPH and PTE surgery, too. Your input is always so helpful and I bet many who hear from you feel such relief and more informed. That's why we share our stories, we are the ones who experience or see these symptoms and side effects daily.

I appreciate you taking your time to not only read my column, but also feeling compelled to leave your feedback. Our caregivers are the superstars in my book. Take care my dear friend.

Darla avatar


I made a decision a couple of years ago for comfort measures with my PAH, a few months after that diagnosis came my stage 4 cancer diagnosis. Its somewhat treatable but not curable. I've been living with severe RA and haven't been to work since 2010. I also have fibromyalgia and a host of annoying autoimmune disorders. I have wonderful supportive doctors. My most recent medical calamity is going blind in my left eye from a detached retina. I've seen that there is life with PAH from others and its a good fulfilling life too. From Chemo to an Aspira drain my body has rejected most treatment. I'm not a quitter, I'm not elderly, but my quality of life sucks. There is a place for going quietly into the night.

Jen Cueva avatar

Jen Cueva

Hi Darla, I'm saddened as I read through your thoughts. Not because you choose comfort measure, but because you've already been through so much, my PHriend. Do you have any support at home or close by that you can talk about these concerns with? Do you see a therapist or have you in the past?

Of course, you're always welcome to vent or share your thoughts in the PH News forums. We are judgement free zone and also want to know how we can best support you through these medical "calamadities". You only have to sign in since I know you have been on before. But I didn't realize you had so much going on. It's frightening and overwhelming, I'm sure. You're never alone, my dear PHriend.

Thank you for taking the time to not only read my column, but also share your story. Hugs and prayers are with you, Darla.

Marcie McGregor avatar

Marcie McGregor

I agree with everything you've said Jen. No matter how many times we share our story, chronic illness is ongoing, so each time we may touch on something different. In my experience it's always therapeutic. I feel like I get as much if not more than the people I'm sharing with. I am by no means a public speaker, but so many times people have said that seeing me have the courage to share makes them feel like they can do it as well. I feel like sharing gives a sense of purpose to the struggles we go through. As you said, there have been times when I've also had to take a step back and refuel my peace. Thank you for sharing your life with us.

Jen Cueva avatar

Jen Cueva

Hi Marcie, like you, I was never one to speak up. But after my PH diagnosis, I knew I had to be the voice and share my journey so others wouldn't feel alone. I've spoken at PH Conferences and other events through the years. But I'm much more comfortable, writing and not on camera. Hehe

It is therapeutic, even though I started to help others, I found it helps me, too. You're right!your efforts in sharing your story as we continue to spread PH awareness! So many benefit that we never know who is reading or watching us when we share. Together we PHight stronger!

Thank you for taking the time to read my column and also sharing your experiences and takeaways. Take care my PHriend.

Regina avatar


Thank you so much for sharing 🙏🌈🌻❤️‍🩹🌎🎀⚕️🫶🏽🐢

Jen Cueva avatar

Jen Cueva

Hi Regina, I appreciate you taking the time to read my column and also that you felt compelled to leave your thoughts. How are you and your family doing? Your support means more than you know.

Take care, Beautiful!


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A Conversation With Rare Disease Advocates