Should you share your story of life with chronic illness?
A columnist explains the benefits of her willingness to be open about PH
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.
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.