Last week while at NIH I had more time than usual to watch TV. One of the shows I watched while lying in bed was Donny Deutch’s The Big Idea. He was interviewing Liz Lange, a very successful business woman who started and sold a multi-million dollar maternity fashion business, about her battle with cervical cancer – something she’d kept the world in the dark about through her treatments.
I want to preface my response to the show by saying it is in no way meant to be a criticism of Lange’s decision to keep her cancer under wraps – or of anyone who opts to keep their medical life private rather than blog about it for the entire world to see. How we handle issues surrounding our illnesses is personal and what’s right for me might not be right for someone else.
But sometimes our gut responses to things are just that – gut responses – and they aren’t always fair, politically correct or even very polite. My gut response to the program was something along the lines of “must be nice to have the luxury of keeping your private life to yourself.” I didn’t mean to be mean or rude. But as I sat in my hospital bed missing yet another week of work to participate in the drug trial, that’s just how I felt. How could I possibly keep this a secret if I wanted to?
Perhaps I took some of the undertones of the program a little too personally because I’ve struggled with my decision to lead my medical life out in the open. I’ve thought a lot about it. How do I talk to my bosses and how much do I tell them? What could the possible consequences be? What does the human resources department have to know? As my company was sold recently, the issues rose to the surface again. Nothing like having your very first conversation with the new human resources person be about your need to be hospitalized the first week of the year and your need for family medical leave act paperwork.
I don’t have to tell my company anything – but what would the consequences of that be?
I thought a lot about launching this very blog. By recording my life with HPS, it’s out there for anyone to Google – any future employer to read about, any future insurance company to use against me one day.
It’s a lot to weigh, and sometimes I wonder if new HPS’ers blogging about their experiences have fully thought through the consequences as well.
In the end, for me, I decided I really didn’t have a choice on this topic. I couldn’t keep it in the closet. Perhaps Lange and I had different choices. When you operate as a mid-level employee with layers of management above you, your life is a little different than someone who actually runs the company. If my boss is late to work, or late to meeting, I don’t question them about where they were, even if I really want to know. But they certainly would want to know where I was if the situation was reversed. Absences for doctor appointments, drug trial visits to Washington, and the run-of-the-mill HPS-type problems such as a leaking ostomy or an especially severe female cycle are a constant, even if manageable, interruption to my work life. If I didn’t say anything, I fear I’d be perceived as flaky, unreliable or unprofessional. Thus, it seemed to me that my co-workers and managers needed to know what was going on.
As for the blog, well, having an ultra rare disease is also different than having cancer. Lots of people have either experienced cancer, or know someone who has. Unfortunately, the mere mention of the “C” word brings up some understanding of illness and even the trauma of confronting life and death. But those of us with ultra rare disorders don’t have that kind of voice or infrastructure working for us. It’s up to us to create those assets ourselves.
I’m happy that so many HPS’ers blog because it helps to put a face to our story and our experiences. There aren’t as many of us to share that responsibility.
Deutsch seemed impressed that Lange had not only battled her cancer, but had been able to do it in secret. There was a tone of kudos for “being the good soldier” whether Lange wanted that sort of attention or not. While I believe that, for me, making my illness public was the right decision – I have had my critics. There are some, some very close to home, who think it’s inappropriate. You’re supposed to be the “good trooper” and never complain. You’re supposed to not want your illness to run your life – but sometimes that isn’t possible. You’re supposed to not make anyone uncomfortable about not knowing what to say when you come back from important tests etc. If you’re really “a good worker” you trudge into work no matter how sick because you’re loyal, even if in the end that isn’t in the best interest of your own health or of the company.
Lange did what was best for her, but don’t think that everyone in the workplace had the same set of circumstances or choices to make. I haven’t.
I am pleased that Lange is now able to share her story of recovery. I hope she finds it as therapeutic as I sometimes find sharing my story. But for the tycoons out there, I just felt the need to say that living the life of chronic illness in the closet isn’t always the best way for go – for employees or employers.
I want to preface my response to the show by saying it is in no way meant to be a criticism of Lange’s decision to keep her cancer under wraps – or of anyone who opts to keep their medical life private rather than blog about it for the entire world to see. How we handle issues surrounding our illnesses is personal and what’s right for me might not be right for someone else.
But sometimes our gut responses to things are just that – gut responses – and they aren’t always fair, politically correct or even very polite. My gut response to the program was something along the lines of “must be nice to have the luxury of keeping your private life to yourself.” I didn’t mean to be mean or rude. But as I sat in my hospital bed missing yet another week of work to participate in the drug trial, that’s just how I felt. How could I possibly keep this a secret if I wanted to?
Perhaps I took some of the undertones of the program a little too personally because I’ve struggled with my decision to lead my medical life out in the open. I’ve thought a lot about it. How do I talk to my bosses and how much do I tell them? What could the possible consequences be? What does the human resources department have to know? As my company was sold recently, the issues rose to the surface again. Nothing like having your very first conversation with the new human resources person be about your need to be hospitalized the first week of the year and your need for family medical leave act paperwork.
I don’t have to tell my company anything – but what would the consequences of that be?
I thought a lot about launching this very blog. By recording my life with HPS, it’s out there for anyone to Google – any future employer to read about, any future insurance company to use against me one day.
It’s a lot to weigh, and sometimes I wonder if new HPS’ers blogging about their experiences have fully thought through the consequences as well.
In the end, for me, I decided I really didn’t have a choice on this topic. I couldn’t keep it in the closet. Perhaps Lange and I had different choices. When you operate as a mid-level employee with layers of management above you, your life is a little different than someone who actually runs the company. If my boss is late to work, or late to meeting, I don’t question them about where they were, even if I really want to know. But they certainly would want to know where I was if the situation was reversed. Absences for doctor appointments, drug trial visits to Washington, and the run-of-the-mill HPS-type problems such as a leaking ostomy or an especially severe female cycle are a constant, even if manageable, interruption to my work life. If I didn’t say anything, I fear I’d be perceived as flaky, unreliable or unprofessional. Thus, it seemed to me that my co-workers and managers needed to know what was going on.
As for the blog, well, having an ultra rare disease is also different than having cancer. Lots of people have either experienced cancer, or know someone who has. Unfortunately, the mere mention of the “C” word brings up some understanding of illness and even the trauma of confronting life and death. But those of us with ultra rare disorders don’t have that kind of voice or infrastructure working for us. It’s up to us to create those assets ourselves.
I’m happy that so many HPS’ers blog because it helps to put a face to our story and our experiences. There aren’t as many of us to share that responsibility.
Deutsch seemed impressed that Lange had not only battled her cancer, but had been able to do it in secret. There was a tone of kudos for “being the good soldier” whether Lange wanted that sort of attention or not. While I believe that, for me, making my illness public was the right decision – I have had my critics. There are some, some very close to home, who think it’s inappropriate. You’re supposed to be the “good trooper” and never complain. You’re supposed to not want your illness to run your life – but sometimes that isn’t possible. You’re supposed to not make anyone uncomfortable about not knowing what to say when you come back from important tests etc. If you’re really “a good worker” you trudge into work no matter how sick because you’re loyal, even if in the end that isn’t in the best interest of your own health or of the company.
Lange did what was best for her, but don’t think that everyone in the workplace had the same set of circumstances or choices to make. I haven’t.
I am pleased that Lange is now able to share her story of recovery. I hope she finds it as therapeutic as I sometimes find sharing my story. But for the tycoons out there, I just felt the need to say that living the life of chronic illness in the closet isn’t always the best way for go – for employees or employers.
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