Cancer Survivors’ Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Research Paradigm
2.2. Research Team and Positionality
2.3. Participants
2.4. Setting
2.5. Data Collection
2.6. Data Analysis
3. Results
3.1. Long-Term Effects
The only thing worse than going through cancer treatment is after cancer treatment…that first month or two after treatment was like oh my gosh, you’re relearning your whole life…it’s a whole new mindset. All your dreams, everything you ever thought, is different now.(Survivor 18, sarcoma)
3.2. Lack of Preparedness
The long-term negative effects, people don’t talk about. You hear all this “I’m a survivor and I feel great after!” You know like I don’t feel great… I would hate to sound like hopeless but I’m sure there are people who would benefit from knowing that they’re not the only one [for] who it wasn’t just a bump in the road”.(Survivor 22, breast cancer)
The issue is that, well what else am I going to look forward to happening to me? What other kind of miserable thing is going to happen to me? They don’t tell you all that stuff. You know? You can get a list of stuff from cancer, but it could be days, months, years. You don’t know what’s going on, what’s coming down the line. When they say long term side effects, they’re not kidding, but it’s glossed over because it hasn’t happened.(Survivor 12, head and neck cancer)
After I was done with the chemo, done with everything else. I felt like every six months, three to six months after, I was diagnosed with another problem. I felt like wait a minute, they told me I was all good. They told me life was going to be great. Things are gonna be good. Now they’re telling me ‘you’re getting sicker’… What? After that, it was like I beat cancer for this?(Survivor 24, breast cancer)
You see all these happy people on commercials and you know, you think Yeah, I’m just gonna get treatment, I’ll be done. That’s not my case… They don’t tell you it is going to be permanent. I remember the moment I realized this neuropathy is not going away. I was a puddle on the floor, you know. [But] you pick yourself up and get over it. You manage it, but I understand, my God, nobody would go through cancer treatment if they know all the ‘what ifs”.(Survivor 23, breast cancer)
3.3. Participation Restrictions
I knew something was wrong with my arm when I couldn’t fasten my bras and I’ve always been able to even after surgery, I’ve always been able to fasten them in the back… [Then] I could not even get the arm back, and that’s why showering is even difficult because I can’t do the back scrub even though I have a brush sponger kind of thing. Not being able to fully use the arm to an extent. Today I had to stop by the ATM. I literally had to get out of the car because the ATM is on the left arm side… So it limits my ability to do things.(Survivor 15, breast cancer)
I am supposed to wear a sleeve and a glove for the rest of my life… My profession prior, I was lifting cots and things like that, very reliant on my left arm. Even trying to hold my great nephew, who’s just turned nine months. Two months ago, my niece in-law, I was holding him with my left arm for his head, with a bottle in my right… And she said his head had to go back further and my arm wouldn’t go back further. And she’s not as understanding as she could be… She just grabbed him because my arm didn’t go back further. And that hurt.[Crying] (Survivor 20, breast cancer)
It was my best friend’s birthday… She really wanted to rent bikes and have all of us ride bikes… I just wasn’t capable of doing that with my neuropathy… Even if I pushed myself, if I did it, I would just have to pop Vicodin all the next day… So I just like took an uber to the next place… Then she wanted to go roller skating and like, you know, I played the games in the arcade like I wasn’t going to be a spoilsport, but like I couldn’t be a part of a couple of hours of activities… It was just disappointing; It also just felt kind of awkward, like they were all having these, like, bonding, bonding experiences. Yeah, I just kind of couldn’t… It was kind of a double bind because either I disclose my status to those people who I didn’t know as a cancer survivor and explain why I couldn’t do it or I just don’t do it.(Participant 13, breast cancer)
I just found my concentration is not what it used to be… I ended up taking early retirement last year and I had planned to work a few more years. But I was struggling and people…were just like not treating me well. They made comments… Someone in H.R. even said to me ‘How do we know you really have cancer?’... Because people look at me and they’re like you look ok. Well, just because I look ok doesn’t mean I’m not struggling.(Survivor 9, head and neck cancer)
What I find is I started cutting things out of my life and I didn’t realize that I was shortening my life or losing things. You just start adapting to stop doing things that you just can’t do and you realize you’re not living life.(Survivor 24, breast cancer)
3.4. Disability Identity
3.4.1. Rejecting
I was applying for jobs… When I saw the list of disabilities that I had to check and cancer was on there, I was so mad. Because now I’m considered a disabled person, because I have this? I thought that was ridiculous… I was really mad and I don’t know when that became—when did cancer become a disability?... Maybe I’m not understanding what the true definition of disabled means, but I don’t feel that I’m a disabled person.(Survivor 25, breast cancer)
I fight against all of what other people might consider my disabilities, like the neuropathy in my feet, that I get acupuncture for. The talk therapy for my cancer survivorship and depression. My hypnosis, chanting, meditating, walking three to five miles a day. I do all kinds of things to keep myself at my best level that I’m able to achieve. But I am diminished, but I am not disabled.(Survivor 11. Breast cancer)
No, not really, because when people see you like that, then they go, ‘What’s wrong with you?’… I’m not missing a leg. And they look at you go, ‘There’s nothing wrong with her”. How do you explain my brain doesn’t work? I have aches and pains that you can’t see. They don’t get that. And then when you sit on a couch all day, they go, ‘Oh, she’s just so lazy”. They just don’t get it.(Survivor 24, breast cancer)
There was one week I lit two fires in my shop and didn’t realize until I saw the flames that I had done that. I didn’t smell anything burn. So there is a disability. But when I think of the label for myself, you know, man, husband, father, mechanic, I don’t think of disability as a label that I am sure makes sense.(Survivor 4, head and neck cancer)
I don’t. There are some things that I would like to be able to do more that I feel like I can’t do. But like the physical limitations, I try not to let that affect my view of myself overall. I feel like I’m more than just body parts or daily duties. And so I think mindset is really important. And for me, a mindset that’s like positive and even maybe inspiring in some way is not that I feel inspired about myself all the time, but to strive towards that.(Survivor 30, breast cancer)
3.4.2. Othering
The reason I don’t want to say I’m disabled is because I don’t want to take a space for somebody that is really disabled. I don’t have a problem with the term. I mean the term may be a little wonky but if I was disabled, I would own it. I don’t have an ego problem with it. I just don’t want you guys to think I’m disabled. I have been compromised in some ways because of my cancer treatment. But I am by no means what I would define the word disabled as being. I don’t need special consideration… For me disability is too strong a word... There is a continuum in my mind between am I compromised or am I disabled? I would say I’m compromised; I’m not disabled. Everybody you talk to is going to have different experience so maybe that’s the continuum. Do you move from compromised to disabled or where do you fall and what resources do you need?”(Survivor 23, breast cancer)
I would say that I’m a person that’s had some of their functionality impaired, but not disabled… Disability came out of handicapped, handicapped came out of cap in hand, where you would sit in a gutter and you’d hold out your cap begging for alms. And so it’s a very, very negative tone. Disability is, by those who are not disabled, seen to be a negative thing. I think disability to me, tells me that if I see you and you have the sticker on your car, that tells me you’ve got to work harder to get through your day than I do. So I respect you… I think the person’s got more guts than the average guy or person.(Survivor 6, head and neck cancer)
The benefit of the thought that you are disabled is in the recognition that your disability is not as profound as another person’s disability and that you need to be grateful. My mother used to have this saying “God bless the mark”. And that would be a declaration of two things. For her, it was a call to pray for that person to receive help and to recognize that you were blessed with the capability that that person can’t do.(Survivor 27, breast cancer)
3.4.3. Acknowledging
It has taken me two years to admit it… I’m disabled. I’m disabled because of people staring at me. You know they are staring at me for the wrong reason now. Not because I have a great outfit on. They’re staring because I’ve got a silver leg… I didn’t really accept that I was disabled at first… It’s when you are out in public that you have to say to yourself, ‘Wow. I’m disabled”.(Survivor 1, sarcoma)
I don’t enjoy being disabled. I don’t enjoy that I can’t have a job. I don’t enjoy that, you know—it’s like I always have to be the special person out and it’s not because I’m super talented and great… It’s because I can’t do it. And it’s very annoying. And it’s very depressing… But you know then on the other side, the cancer, people are like ‘Hey, you’re alive”. I’m like, yes but am I quality of life-ing?(Survivor 8, breast cancer)
Disability, if you have to bring… somebody’s attention to something that you’re entitled to by law… it’s your choice how you want to interpret disability. But by law you are defined as disabled and if you need to use it, use the term. Like, you know, ‘I, I’m entitled to an accommodation based on my disability”.(Survivor 14, sarcoma)
I have a disability that people cannot see. I do have a handicapped placard because I know I’m a fall risk. The less time I spend walking around probably the better… This is another problem that I see with disabilities, is people are insensitive to that and one of their mottos is, ‘Oh, we’re so inclusive”. Well, if you’re inclusive, why do we have to fight for these things?(Survivor 10, breast cancer)
3.4.4. Affirming
I do consider myself to be a person with a disability. I mean, my leg missing is pretty disabling… If I didn’t have a leg missing and I just had cancer, I don’t know if that would be true. Which is quite unfortunate for people in the cancer community because the disability community includes them as well… Apparently, having a disability, it’s like, you have to look or feel or act and cancer doesn’t make you feel that way. And so then also this negative stigmas and stereotypes about having a disability, like, like, no one wants to sit at the table with, like, the losers. Like that’s legit, how they don’t really want to be a part of it. But but we’re not losers… It’s really unfortunate, because there are laws in place that can protect people who have cancer, and [if they] would allow themselves to accept the help, they will be able to benefit greatly... So people who have disabilities just need to find some way to mesh with that word because things in place to protect you.(Survivor 21, 2-time cancer survivor, childhood sarcoma, breast cancer)
I’ve done a lot of work with the Americans with Disabilities Act, so I'm, I think, well informed about that. And I’ve also been a board member of [a disability rights organization], which is, they do a lot of work with people with disabilities… Their leadership, in fact, they were really, really very supportive and they would check on me all the time. And, and there was one woman in particular who said to me, ‘You know, you have a disability now, and don’t let anybody take your rights away, you know, away”. Because I had an instance at work when this first happened that, I was basically told in one of my reviews that, you know, I was no longer performing well because they were mistaking the fact that I was kind of having trouble speaking as a lack of confidence… It was hard for me personally because I had been with this company for so many years and was the senior person. I took it more as an insult that I even had to, like, go through all this explanation as to what was happening with me… And I think had I not had that relationship with [disability organization], [I wouldn’t] understand this reality of the disability community.(Survivor 9, head and neck cancer)
I think once I started to be more aware of… the history of the ADA and of like, the broader movements, social movements around accessibility… I think that, like the term disability and using the label disability was very valuable to me in terms of situating my experience inside something that isn’t just a problem to be solved... and is actually just a part of something larger, that hopefully society is figuring out how to deal with a little bit better. And so, it’s not only on me personally to fix myself. I think that was a relief.(Survivor 13, breast cancer)
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Survivor | Cancer Type | Age (years) | Gender | Race | Last Cancer Treatment (year) |
---|---|---|---|---|---|
Survivor 1 | Sarcoma; Breast | 66 | Female | White | 2019 |
Survivor 2 | Head and Neck | 47 | Male | White | 2011 |
Survivor 3 | Breast | 53 | Female | White | 2014 |
Survivor 4 | Head and Neck | 38 | Male | Unknown | 2016 |
Survivor 5 | Breast | 53 | Female | White | 2021 |
Survivor 6 | Head and Neck | 70 | Male | White | 2012 |
Survivor 7 | Breast | 66 | Female | White | 2014 |
Survivor 8 | Breast | 58 | Female | White | 2016 |
Survivor 9 | Head and Neck | 61 | Female | White | 2017 |
Survivor 10 | Breast | 69 | Female | White | 2010 |
Survivor 11 | Breast | 69 | Female | White | 2010 |
Survivor 12 | Head and Neck | 72 | Male | White | 2013 |
Survivor 13 | Breast | 42 | Female | White | 2016 |
Survivor 14 | Sarcoma | 67 | Female | White | 2008 |
Survivor 15 | Breast | 66 | Female | Multiracial | 2020 |
Survivor 16 | Sarcoma | 22 | Female | White | 2020 |
Survivor 17 | Breast | 66 | Female | White | 2005 |
Survivor 18 | Sarcoma | 29 | Female | White | 2021 |
Survivor 19 | Breast; Lung | 69 | Female | White | 2003 |
Survivor 20 | Breast | 58 | Female | White | 2019 |
Survivor 21 | Sarcoma; Breast | 29 | Female | Black | 2019 |
Survivor 22 | Breast | 63 | Female | White | 2016 |
Survivor 23 | Breast | 62 | Female | White | 2015 |
Survivor 24 | Breast | 53 | Female | White | 2008 |
Survivor 25 | Breast | 48 | Female | White | 2015 |
Survivor 26 | Head and Neck | 59 | Female | White | 2016 |
Survivor 27 | Breast | 79 | Female | White | 2016 |
Survivor 28 | Breast | 69 | Female | White | 2011 |
Survivor 29 | Breast | 79 | Female | White | 2006 |
Survivor 30 | Breast | 59 | Female | White | 2006 |
Body & Physical Changes | Representative Quotations |
---|---|
| I don’t eat in front of anyone. Because I do choke a lot when I eat. (Survivor 2, head and neck cancer) |
The neuropathy has given me difficulties with my balance. I’m extremely clumsy now. (Survivor 10, breast cancer) | |
I have difficulty with the strength in my left shoulder and difficulty with range of motion. So certain items of clothing are harder to get off. Lifting is still a struggle and I still have neuropathy in that shoulder. Fatigue. (Survivor 18, sarcoma) | |
Brain and Cognitive Changes | |
| I have anomic aphasia, which affects my speech and my ability to process numbers and words, and my memory is affected, and I cannot learn new things readily because I don’t retain new information. (Survivor 8, breast cancer) |
I can’t retain things [crying]. Sorry it’s emotional. I have a hard time learning new skills. I’m an educated person and I had a functioning life, and I can’t function anymore. (Survivor 24, breast cancer) | |
Thoughts and Feelings | |
| I just want to look normal. I don’t want to look like I have one breast. I don’t want to look disabled; I want to be normal…. Mentally I was probably at the worst point of my time because I couldn’t stop crying. I didn’t know what to do. I was really in a bad way. (Survivor 14, sarcoma) |
You realize your mortality and you’re becoming you know like sad like you’re going to miss out on things and so that’s depression. (Survivor 25, breast cancer) |
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Magasi, S.; Marshall, H.K.; Winters, C.; Victorson, D. Cancer Survivors’ Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity. Int. J. Environ. Res. Public Health 2022, 19, 3112. https://doi.org/10.3390/ijerph19053112
Magasi S, Marshall HK, Winters C, Victorson D. Cancer Survivors’ Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity. International Journal of Environmental Research and Public Health. 2022; 19(5):3112. https://doi.org/10.3390/ijerph19053112
Chicago/Turabian StyleMagasi, Susan, Hilary K. Marshall, Cassandra Winters, and David Victorson. 2022. "Cancer Survivors’ Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity" International Journal of Environmental Research and Public Health 19, no. 5: 3112. https://doi.org/10.3390/ijerph19053112
APA StyleMagasi, S., Marshall, H. K., Winters, C., & Victorson, D. (2022). Cancer Survivors’ Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity. International Journal of Environmental Research and Public Health, 19(5), 3112. https://doi.org/10.3390/ijerph19053112