The importance of PHriendships

When you deal with the onset of a chronic illness you are
forced to confront your relationship with yourself: your expectations of your future and work/life balance. For me pulmonary hypertension revealed greater meaning in my connections with others too. I realized just how lucky I was to have great friends who stuck by me through my new set of circumstances. I also truly valued those new relationships I formed, many of which were born out of a common experience of ill health, or indeed pulmonary hypertension itself.

Like many patients, I initially struggled to comprehend my diagnosis. Friends knew I was very ill but also couldn’t quite grasp the seriousness of what it entailed. Part of this was due to the fact that we were all in our twenties. We were not equipped to deal with serious ill health at that point as, for the main part, we had not been exposed to it.

But my friends and I gained understanding as time went on. For me, a good friend was someone who understood when I was tired and who knew that I might need to change my plans at the last minute. There was Anna, who knew that though I could dance in my seat at a Madonna concert, but couldn’t walk the steep hill from the concert venue! There was Tom who flew to San Diego to be there for my PTE surgery and who gave me a place to crash whenever life at home became too much.

I also developed relationships with other people with PH. One of those was a mother (also called Sylvia) from Northern Ireland who I’ve never met in person but versed me on everything I could possibly need to know for life before and after PTE surgery. We still check in on each other using that shorthand only used by those people who have been through such similar life-altering events. At PHA’s last conference I was telling my story to others at a support group meeting when another patient jumped up and exclaimed, “Oh my God, you are Sylvia, the Irish girl!”
That was Amanda and it turned out she had her operation a week after mine and had heard encouraging tales of how well I had responded to surgery. From that point on we became firm friends and I even visited her in her hometown of St Louis this year. (see photo)

And there are so many others I’ve met online and in person, people who I would never have known were it not for our connection to PH. They are always ready to share encouraging words or offer advice.

My old friends remind me of who I was before my illness while my new friends give me inspiration for who I can be after serious ill-health. Both are equally important and I couldn’t imagine the last few years without them.

How have your friendships developed and changed since your diagnosis?

Drawing the line . . . how much to tell

Who have you told about your illness? How much do you generally tell people and when do you tell them? When young adults are faced with a disease such as pulmonary hypertension they have to negotiate these issues
whenever they deal with their employers, universities, co-workers, new friends
and even dates.

Before my PTE surgery I often got very stressed at the thought of telling people about my illness. I never quite got the hang of knowing when to tell or what to tell. I didn’t develop the thick skin necessary to combat the sometimes negative or naïve comments an explanation sometimes drew. My worst experience of dealing with an employer was when a supervisor asked what type of illness I had. I told him a lot about pulmonary hypertension and even handed him a PHA brochure. His response? “So, really, there is nothing wrong with you.”

What I didn’t understand at the time is that the key to this, just as divulging any personal issue, is drawing boundaries. It does not have to be an all or nothing scenario. I’ve learned that I can tell my boss just enough to allow for any flexibility I might need without feeling like I am crossing
the employee/employer line.

I’ve noticed that generally friends and co-workers are sometimes uncertain about how much to ask or, reversely, ask too much. So you learn to draw the line yourself. I now only reveal the information with which I feel comfortable. On the other hand, dropping some casual comments into the conversation will also let people know that it’s ok to talk about the elephant (or O2 machine) in the room.

Dating is another minefield when it comes to revealing information. You might have a stock statement you use in scenarios such as this, one that offers an explanation without being overwhelming. Even as someone who is comparatively healthy, I am still cautious about revealing my history and the effect PH had on my health in recent years. I’ve learned to go
with my own instincts. If I don’t feel I can trust someone I hold back until I get to know them better. Recently, I chose not to immediately reveal my last name to someone for fear they might google me and find my connection to PH before I was ready to tell. Instead, I slowly disclosed over time the impact the disease had, and continues to have, on my life.

For me, putting these boundaries in place, gives me a sense of control. It allows me to write my own narrative on what is, at the end of the day, my story. This is what works for me.

How do you deal with this? Where do you draw the line?

Relating to Illness on Screen

I recently saw the new movie, 50/50, in which the main character, Adam, a 20-something professional, is diagnosed with a rare form of cancer. The film deals with his health struggles and their impact on his life. Where this movie differs, in my eyes, to almost any other film dealing with illness, is that it doesn’t martyr the characters or overdramatize key moments such as diagnosis, surgery or recovery. Instead, it realistically and sensitively (for the most part!) deals with the large and minor ways serious illness affects everyday life.

Whereas many films that deal with these issues place the disease as the patient’s central focus, most pulmonary hypertension patients realize that life does not stop just because a serious condition enters our lives. Instead we still have to maintain our relationships, negotiate work or college and keep up some form of normal routine.

For me, the hospital scenes were particularly reminiscent of my own experiences. Diagnosis is not always the “time standing still” doom-laden moment typically depicted on screen. Often it is a phrase casually thrown out by a doctor and only registers with time and research on the topic. Just as Adam did, I once found myself googling the unfamiliar terms I’d encountered, terrified of what I found. Likewise, the emotion surrounding major surgery is typically overshadowed in reality by the practicalities of pre-surgery prep or, for family members, the hours of waiting for results.

One of the more prevalent clichés that I’ve seen in “disease” movies are the secondary characters who either unconditionally support their ill friend or family member, or show their true colors and flee at the challenge of handling such a serious situation.

Real life, for the main part, is a far more complex affair. Friends and family sometimes disappoint or may feel, at periods, overwhelmed. They remain human, not superhuman. 50/50 successfully depicts people who don’t necessarily transform due to a serious diagnosis but do adapt. The immaturity of Adam’s best friend, Kyle does not stop because Adam is sick but, in some of the movie’s most moving scenes, we see his willingness to support his condition.

Likewise, PH does not transform patients into saints! If we are lucky we use the disease as an opportunity to better ourselves and our lives. But, just like Adam, who fails to see the impact of his disease on his family, we can struggle, at times, to see beyond our own difficulties.

But, for me, the most relatable and refreshing aspect of the film is its willingness to allow humor into every situation, no matter how dark. Kyle teases Adam about his bald head or scar just as my brother teased me about my blue-ish nails or entertained me with stories in the cardiac ward. Just like the film, illness can be inspiring and moving, but also funny!

Are there any movies that remind you of your own struggles with PH?