My social life, based solely on my pictures online, may seem somewhat average for a 20-something-year-old. On my social accounts, you can find pictures of my friends and me; photos from the beach or of fancy drinks, and selfies from long car rides. What people don’t see is the oxygen cannula I took off before taking the picture, the many times I have to rest just to be able to go to the beach, and the two sips I took of a drink that I probably shouldn’t be drinking. Honestly, my social life is nothing like it appears.
Since my pulmonary hypertension diagnosis and oxygen therapy initiation, my social life has changed in ways that social media can’t capture; in ways that even my closest friends don’t understand. Having a lung disease has made social event participation physically exhausting and leaves me with crippling fatigue for days afterward. It has caused me to cancel plans and makes it hard for me to be spontaneous.
Managing illness and trying to maintain some sort of social life is extremely difficult. Going out with friends almost always means having to pay for a fun time the next day. When I get an invite to do something, I ask myself, “Is this worth the price I will pay?” Staying out later than usual, using energy to participate in conversations, and being more physically active greatly impact how I feel the following day. I am willing to make the sacrifice sometimes, but if I am already feeling more fatigued than usual, then I have to forfeit plans.
Canceling plans is difficult for others to understand. I’ve had experiences where those who are closest to me do not fully understand the impact that pulmonary hypertension and another heart condition has on my body because I look “OK” from the outside. I can see why people would get confused when I can go from feeling “OK” to unwell within a few hours. It’s even hard for me to wrap my head around such a dramatic shift in how my body feels.
I was never one to cancel on a friend last minute. I would set plans days in advance. Now, it’s hard for me to make these types of plans. My health doesn’t care about dinner dates. It doesn’t care that I had something planned for weeks. It gets in the way of my life, and that’s something that I have learned to accept. Accepting it does not make it any less frustrating to call someone and say, “I’m sorry, I can’t make it.”
I would love to go back to the days of being carefree. Now, going anywhere while dependent on oxygen and medications throughout the day takes careful planning. Any social event requires enough oxygen tanks to get me through, and an estimated time of how long I will be at a certain place to plan for medications.
Although my social media shows pictures of me looking like I have a typical social life for someone my age, that is not my reality. With my diagnosis and need for oxygen, I am limited in what I choose to do and what type of social events I attend. Adjusting to a new social life is difficult and an ongoing process. Some days, it is easier to recognize and accept my limitations. On other days, I still find myself pushing through trying to be like everyone else.
Has your social life changed since your diagnosis of pulmonary hypertension? How does the disease limit your social life? How do you cope with this and learn to accept limitations? Join the PH News forums to discuss this topic and add to the conversation.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.