Experiences with Work
Living with a hereditary cancer syndrome can affect the way people relate to their workplace, interact with their co-workers, or function at their jobs. People we interviewed described some of the specific challenges they encountered at work, and general concerns such as needing extra time off to attend more frequent medical appointments or a lighter workload to reduce stress. People also talked about finding their employers and co-workers to be, as Amy put it, “very supportive” and ”very understanding.” Across all kinds of work settings, our interviewees had questions about how and with whom to share personal health information.
Accommodations and Adaptations
Several people spoke about ways their workplaces accommodated their health needs. Joan, for example, said she is lucky to work in a place where through two different cancers she has been able to work so as to “put normalcy in my life” and to stay home when too sick to go. Others described how they themselves adapted habits and behaviors so as to simultaneously take care of themselves – for example, by being close to a bathroom or taking sick days at strategic times – and excel at work.
Paul says his employer was willing to accommodate his needs.
Paul says his employer was willing to accommodate his needs.
But I also have good fortune to work at a kind of a smaller company where they're a bit more understanding.
Mm-hmm.
So I've had to take large amounts of time off for surgeries and recoveries, and, you know, they're just, “take the time you need, and, you know, get healthy, and come back.”
Mm-hmm.
And they allowed me to come back on light duty until I was up and running again. And now I'm at a point where I can just do the job, I have no restrictions. And, you know, I know that that can be an issue with people, that they-- you know, not a lot of people have the same luxury that I did of having understanding supervisors.
Steve Z. missed work for surgery to remove polyps, and now manages symptoms on the job.
Steve Z. missed work for surgery to remove polyps, and now manages symptoms on the job.
At one point I was going twice a week. I'm like, oh my god, afterwards, you know, going so much. Never thought I'd go to the doctor's that much. I missed school. I missed a lot of school.
Around the surgery?
Yeah. I left school mid-May. Took the rest of the year. Had the surgery, like, middle of June. And I was good in September to go back, so missed a month or something like that. I guess that's a lot for me.
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I go to the bathroom a lot. Like they give me medicine for it, but I don't-- I'd rather just go to the bathroom, like 10, 15-- 15 times a day I go to the bathroom. So that's [INAUDIBLE]. That's the part you get used to. I've been used to it. My bathroom's right next to my classroom. Get through my day fine, or I won't eat. You know, once I get to school, I know what kind of day I have. So just the day to day figuring out the diet part-- that's been the most difficult part.
Challenges and Opportunities Related to Work
Some of the people we spoke to found it challenging to be at work for different reasons. Gina felt conspicuous at work because of her frequent medical appointments. Joan was concerned about work-related stress “fueling cancer.”
Maria H. couldn’t continue with her physically demanding job and is taking it as an opportunity to pursue higher education.
Maria H. couldn’t continue with her physically demanding job and is taking it as an opportunity to pursue higher education.
About a year and a half ago more or less, since they removed the nodes in this arm and that brought some minor problems in my arm, the oncologist gave me a restriction to not lift more than 20 pounds with my left arm. And in my work, I had that restriction. And they told me that since my work that I was doing , which is nursing assistant, required that I lift patients and that was more than 50 pounds, well, that I couldn’t continue doing that job at the moment, that when some time had passed, well it would be different. So, in that sabbatical year, I took advantage of starting school and it’s something that I never thought that I could do. I mean, it was another good thing that came. I never thought of it in Mexico. I am a social worker. I went to the university. And when I came here, I thought that I couldn’t do another type of work. And that stays with you, that idea even though your degree and your knowledge, although you change countries, no one can take them from you. But you can’t do the work that you were doing. So, at that time, I said that I am not going to be able to do this heavy work anymore. My life changed. I have to take care of myself and I entered college to take up a technical career like an administrative medical assistant, or something like that. And I started to study that. That is why I went back to school. But my dedication is like – school is very different in Mexico. Here there is a lot of support for what you are going to study and the exams. And, and well, there are many resources, people who support you, the laboratory where they tell you – there is always someone who is supporting you to do a better job. And that was motivating me to do well, even if it was a job that would take a normal person, or a native, an hour, it took me three or four because I had to understand. Well, that was how it went, so... It took me a lot of time. But up to this point I have a 4.0 average. And in those semesters, I took 12 to 14 credits. Now I am only taking six credits, now, and I only have two weeks left, also with a 4.0. I mean, I will finish well. But it is like I was saying, but that is - and at the time which I –why I said that it is so easy to get good grades, why don’t they do that? So, now I tell the young people, and with my children, why didn’t I enter before so that I would have known what the system was, what it was to be in school.
Hace año y medio más o menos, debido a, a que me quitaron los nódulos de este brazo y a que traía problemitas en mi brazo, me dio la oncóloga una restricción de no levantar más de 20 libras con mi brazo izquierdo. Y en mi trabajo yo llevé esa restricción. Y me dijeron que, como el trabajo mío que yo hacía, que es ayudante de enfermera, requería que levantara a pacientes y que era mayor a hasta 50 libras, pues, que no podía yo seguir haciendo ese trabajo de momento, que ya que pasara ese tiempo, pues, ya sería diferente. Entonces, ese año sabático lo aproveché para entrar a la escuela y algo que nunca pensé que yo podía traer. O sea, es otra cosa buena que me trajo. Yo nunca pensé en México. Yo soy, tengo [uh] soy trabajadora social. Fui a la universidad. Y cuando vine aquí, yo pensé que yo no podía hacer otro tipo de trabajo. Y se queda uno con esa idea aún cuando tu título y tus conocimientos, aunque cambias de país, no te los quita nadie. Pero no puedes hacer el trabajo que hacías. Entonces, en esta vez, yo dije ya no voy a poder hacer este trabajo pesado. Mi vida cambió. Tengo que cuidarme y empecé—[um] entré al colegio a tomar una, unas, una carrera técnica de como asistente de médica administrativa, o algo así. Y empecé a estudiar eso. Por eso volví a la escuela. Pero mi dedicación es como-- la escuela aquí es muy diferente a México. Aquí es como mucho apoyo de que vas a estudiar y el examen. Y, y bueno, hay muchos recursos, gente que te apoya, el laboratorio donde te dicen-- siempre hay quien te está apoyando en hacer un mejor trabajo. Y eso me motivaba para hacerlo bien, aún cuando un trabajo de que a una persona normal le llevara, o nativa, le llevara una hora. A mí me llevaba tres o cuatro porque había que entender. Bueno, así fue, pues. Me consumió mucho tiempo. Pero [ehm] hasta ahorita llevo mi promedio de cuatro. Y en los semestres tomaba 12 o 14 créditos. Ahora solo tomo seis créditos ahorita y ya nomás me falta dos semanas, también con cuatro. O sea, voy a terminar bien. Pero es que yo decía, pero es que sí-- y a la vez yo ya-- por qué decía que es tan fácil sacar tan buenas notas, ¿por qué no lo hacen? Entonces, ahora les digo a los jóvenes, yo con mis hijos, por qué no entré antes para yo haber sabido lo que era el sistema, lo que era, lo que estar en la escuela.
Gina feels that her co-workers treated her differently because of her frequent screening.
Gina feels that her co-workers treated her differently because of her frequent screening.
This may sound odd. I do kind of feel like-- I don't know if stigma is the word-- but because I am watched over so carefully, like I almost sometimes feel like other people, coworkers, friends, strangers, are like, “why, why do you have another appointment? Why?” You know, “they're watching you in three months?” Like not understanding the high-risk part. And then kind of almost making me feel like hypochondriac, or something. But I'm doing what the doctors are telling me to do.
Joan found it difficult that her co-workers often shared other tragic cancer stories.
Joan found it difficult that her co-workers often shared other tragic cancer stories.
And I was working at the [BLANK] at the time, and I said to one of the psych nurses, “what is it, why do people think that I'm the cancer expert?” Why are they all saying, “Oh, my uncle had this cancer, and he died from it,” and so and so forth.
Being diagnosed with a hereditary cancer syndrome also created some new career opportunities for people we interviewed. Chelsea, for example, switched jobs after her diagnosis so as to work on cancer research.
Briana says her diagnosis motivated her to make a career change.
Briana says her diagnosis motivated her to make a career change.
So when I applied for the internship that I'm a part of now working on a research study, I wrote a personal essay that talked about why I was making this big switch from agriculture, and having a fairly good job in-- that's a whole other story-- good jobs in agriculture, but like having a fairly good job in agriculture, switching over, you know to a very, you know entry-level position in health care, and going back for my Master's, in a fairly different field than public health. So I remember in my interview, we talked about it. And I kind of explained my interest in hereditary cancers, and modifiable life choices. So the premise on what I applied for grad school for, and for my job, is trying to work with low-income and under-served communities with surrounding knowledge, with looking at modifiable life choices and its impact on cancer.
Lori looks for absorbing tasks at work to get through times when her cancer risk is distracting.
Lori looks for absorbing tasks at work to get through times when her cancer risk is distracting.
Some days if it’s really close to an appointment, or if I know my sister’s going through another test or whatnot, it’s hard to concentrate. But I try to just find something that’s going to keep me really, really busy, and busy for a long period of time. Not little projects here and there, but something that will keep my concentration away from everything else so I can get through the day and come home to where I can let loose, or whatever needs to be done. If that means crying or whatnot.
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You learn to control it when you have to.
Concerns about Work-Based Health Insurance
Several people expressed concerns about losing their work-based medical insurance or about what would happen to them if they lost or changed jobs. Lisa S., for example, went without pay for two and a half months because she couldn’t get short-term disability coverage.
Heather had concerns about having to disclose her condition and losing her insurance.
Heather had concerns about having to disclose her condition and losing her insurance.
The first couple years-- the first probably two to three years after learning that I had Lynch syndrome-- I was really scared of leaving my job, because I thought it would mean going somewhere new, needing to get new health insurance. I also thought about my life insurance policies. Right? All these things that are through my employer as my benefits package with my employer. Well, starting now, when I went somewhere new, now I have a preexisting condition. That is what this is classified as-- a genetic mutation is a preexisting condition. And now that becomes something I have to disclose. And how is that going to affect my health insurance benefits, or my life insurance benefits?
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There’s been, there was this real fear for me around, man, I guess I better like this job because I'm going to have to stay here for a long time. You know and at first, I ultimately felt like I had to go to my benefits manager because I needed somebody's help in trying to navigate the insurance side of it. But I otherwise didn't tell a soul.
Ronnie worries that she might be forced to leave her job.
Ronnie worries that she might be forced to leave her job.
My mom was basically forced to retire early when-- like after she went through treatment.
--
But they didn't want to run the risk of her getting it again, and the hosp— and her workplace having to pay for all of that again. And so, I think I was—I had concerns that were sort of similar. Would my workplace still want to keep me around? Would I have a job? And if I don't have a job, then I don't have insurance, and then if I get cancer again…
Mm-Hmm.
…then like, I don't have a way to pay for it, and then I'm going to die. So, there was a lot of that vicious cycle kind of thinking.
Sharing Only Part of the Story
Some of our interviewees described telling only some – but not all – of their co-workers about their cancer risk and the medical procedures that are part of their lives. Others told co-workers about just some aspects of living with risk.
Steve Z. explains his circumstances to some people at work, but not to everyone.
Steve Z. explains his circumstances to some people at work, but not to everyone.
Do people at work know why you're taking these periodic days, or are you just saying “I need this time?”
Yes, well, obviously, when I missed a month and a half--
They knew.
They knew something was up. I didn’t really share it with anyone who wasn't-- my friend I teach with, who recommended the doctors down at [Institutions]. Obviously, he knows. And then some of my close friends. But for the most part, I just kept it to myself.
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My principal knows, obviously, because there’s days where I gotta go, I just-- I would just go, I'm going to go home. Work's done or whatever. But my principal knows, and leadership knows.
Right.
Because they, again-- you have to fill out-- miss that much time, obviously, doctor's notes, things like that. But no. I don’t say a whole lot. I don't share it. With anyone, actually.
Our summary on identity, emotions and mortality talks about how cancer risk changed people’s overall relationship with work.