Who would I be without illness?

Sylvia, smiling from her cube at PHA's office in Silver Spring, Md.

Today's post comes from the newest member of the Generation Hope Blog team, Sylvia! From Ireland, Sylvia was diagnosed with pulmonary hypertension secondary to chronic thromboembolic disease more than eight years ago. Sylvia is currently working at the Pulmonary Hypertension Association (PHA) through a program that allows young professionals to gain international experience in the United States. 

While browsing a blog on chronic illness recently I came across this question and it stopped me in my tracks. Who would I be without illness? Like many Generation Hopers, pulmonary hypertension had entered my life at a formative age, in my case my mid-twenties. Like most people I was still figuring out who I was, finding my way on the first steps toward a fulfilling career and making (and breaking) relationships. I was very much a work in progress.

Almost nine years later and I can barely recognize the person I was back then. But was it illness that changed me? Had I not become ill would I still be the “me” I am today, regardless? I can never know. But I’d like to imagine that the challenge of dealing with such a serious condition and its impact on my life accelerated my maturity. I got to where I was supposed to go; I just arrived a little earlier than planned.

Of course, the question “who would I be without illness” has many negative connotations too. Without illness I would be further along in my career, I would never have moved home with my parents while others moved on, got married, and had kids. But, for me at least, the perspective and life knowledge I’ve gained have far outweighed these problems. Here are just five of the ways that I know PH has changed me for the better:

Pulmonary hypertension revealed a strength in me I could never have imagined I possessed. It allowed me to deal with a scary prognosis, the ignorance of others to a rare disease, and gave me the courage to face a massive surgery overseas. This strength has been a gift to me and made me realize no matter what happens I have the resources within myself to deal with anything.

PH has also made me less money and career-driven. Although our society equates career with success, I’ve learned to establish an identity for myself not purely driven by work. For me now finding flexible, fulfilling work that accommodates my needs and lifestyle rather than the other way around is my priority.

PH made me much more aware of the true priorities in life, primarily my friends and my family. Going through my twenties and early thirties being seriously ill (and on more than one occasion, close to death) it was hard to identify with others my age who stressed over their promotions, broken relationships and money worries. Now, that my health has improved I’ve found somewhat of a middle ground (everyday worries affect us all!) but I still appreciate the life perspective I’ve gained. 

Pulmonary hypertension has given me permission to trust myself!  For years I worried about what everyone thought about me. Now I concentrate on what I think and am not afraid to remove myself from unhealthy situations and people.  I am now far more trusting of my instincts and only surround myself with friendships that are positive. The eventual diagnosis of my PH after years of dismissal by doctors also validated my expertise over my own health.  These days, I continue to listen to my body and if it’s asking me to rest, I rest!

Pulmonary hypertension’s interruption to my life removed the illusion that we have to follow a set plan in life. While many people feel an expectation to have their marriage, home and children in place by X date, I hope to do these things when the time is right for me. And perhaps the only advantage to knowing I can’t have children naturally is that I don’t feel the pressure of a ticking biological clock. I’m following the path that suits me. This year, for instance, I’m working abroad, something I had always wanted to do. We all have the right to draft our own individualized life plan. 

All in all, pulmonary hypertension has taught me many lessons. I may not have chosen to learn these lessons in the manner I did but I’m glad to have grown as a result. 

How has illness changed you? Do you think pulmonary hypertension has benefited your life in any way?