PH, Professionalism and the Digital Age

Colleen Brunetti

When I was first diagnosed with PH, I was teaching part-time in a public school. I was met with sympathy and promises of support from the school community. Within months, however, my teaching assignment changed: my hours were cut, my commute extended, and a student was placed on my caseload who required both physical restraints for violence and running after because he tended to bolt. When I tried to have my assignment adjusted, I was shown the door … or I quit … or I was kind of fired. Whatever you call it, I was out of a job, and the correlation between my diagnosis and the change in job assignment was just too convenient to ignore.

Could I have sued? Yes, probably. But I was immersed in this totally terrifying world of being a newly diagnosed PH patient. Like so many, I didn’t know if I was going to live more than a few years. I simply did not have the energy or internal strength to take on another fight.

I moved on from that job and began teaching online college classes, something I still do today. A little over a year ago, I also started my own company teaching sign language to kids, caregivers and educators.

Both jobs are independent contractor-based. I have to consistently earn the right to do the work based on job performance. There is no guarantee of work and no net to catch me if it goes badly. But it is work and work I enjoy.

Because of my experience with the public schools, I have guarded the secret of my PH from anyone I have contact with on a professional level. However, in my private life, I am involved daily in advocacy and awareness raising. My activities have become public knowledge and widely chronicled online in my blog, Facebook, newspapers, radio interviews, and through work with PHA. In short, if you Google my name, it’s connected with PH.

This has presented a huge professional dilemma. I have worried constantly that word would get out and I would again find myself without employment because someone jumped to conclusions about what PH means as far as my ability to meet professional expectations. Two semesters ago, this worry started to materialize. A college student did indeed do a Google search on me. Then he wrote me about what he found in regard to PH. It’s safe to say he did not understand what he was reading, but I was shaken.

I talked to my friends in Generation Hope about these concerns. Should I just come forward and tell my employers? Their advice was good. In short, it was better to come forward and be in charge of what information got out, and how it got out, than to be blindsided by information someone found online and misconstrued.

Still, I dragged my feet for a while. I was comfortable just doing my job and being trusted as a professional based on the merit of my work. I did not relish the idea of having these good relationships tainted by something like PH, and I had little reason to trust things would go well since they had gone so badly in the past.

But finally, I got sick of it all. I got sick of worrying and hiding and screening friend requests on Facebook. PH is such a big part of my life; I didn’t want to hide it anymore. I started with the sign language company I do some independent work for. I called my national director, took a deep breath and told her the story. She’s a wonderful lady, and her response was warm and supportive. Since that call, I’ve been hired to do even more work for them.

The college was harder. It’s a more high-pressure job, it’s most of my income, and if I lose it, my family and I are going to be in a very difficult financial situation. Finally though, I just had enough of the tiptoeing around, not to mention I had my parents (who also work for the college) under gag order not to talk about my PH. That was difficult for them since they couldn’t do any awareness work in the college community.

I sat down and wrote a long letter to my supervisors. I told them my story, and why I had hidden it for so long. I emphasized that I remain, as always, dedicated to my students. The response has been supportive, as has follow-up communication.

I’m slowly relaxing and getting comfortable with the word being out there, trusting that when the hiring season next comes around, my evaluations and work ethic will be what they look to once again.

Conventional wisdom says you should keep your professional and personal life separate, and to a point, I agree. Certainly I’ve seen the dark side to why that is. However, in the digital age, this is becoming more difficult. There is something to be said for being in control of the situation and managing how and what gets out about your medical condition. There’s not much you can do about how PH is going to affect your life sometimes. But there’s a lot you can do about how you react to and handle it, and how you use those times to educate others. The professional arena is just one more place to make those considerations … and sometimes a leap of faith.

By Colleen Brunetti, MEd, PH Patient, Member of Generation Hope

This article first appeared in Pathlight Spring 2012