Experiences of social isolation evolved over time as the survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation following their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. Table 1 displays the participant's demographic characteristics according to the four main trajectories, while Table 2 displays their disease characteristics and late effects by trajectory. These trajectories shared some similarities but also differed in key life events, stages and dimensions of the survivors' lives, such as school experiences, parental support, strategies for coping with difficulties and future outlook, as summarized in Table 3.
No social isolation
Eleven of the cancer survivors in this study never experienced social isolation.
No social isolation after treatment
After completing treatment, these survivors returned to elementary or high school without significant physical or cognitive impairments and they continued with social activities, sports and “regular life things,” which enabled them to maintain their friendships. They were not bullied or socially excluded, and many had friends who stuck with them throughout their cancer treatment.
I had taken that entire time off of school, so as an adolescent I was relieved that I could get back into it and get back into the social aspects of life and play sports again and all of that. So I was very focused on things getting back to normal… [I] didn’t feel like I was ostracized at all at school. I felt like I had a lot of support from my peers and, it wasn’t a difficult reintegration at all. [Lymphoma survivor]
These survivors commonly described the supportive relationships they had with their parents and siblings as essential in assisting them to build self-confidence and encouraging their participation in activities that would “get me into the social environment” after completion of their cancer treatment. A few of these survivors attended a camp for children diagnosed with cancer when they were younger, and at that time, benefited from friendships with other survivors.
Current social life
These survivors currently have fulfilling social lives, close relationships with old and new friends, and friends from a variety of networks, such as work, school and sports teams. They continue to draw on the positive support of friends and family.
I have such an amazing group of friends and family that if I ever worry about it [cancer recurrence] or if I ever get sent for way more tests than the regular, then maybe I get a little bit more worried and speak with my family and friends but I think my family is quite unique and very supportive and maybe other people don’t have that… So I’m grateful for them. And I think if I didn’t have them I probably would seek out help. [Nephroblastoma survivor]
These survivors are comfortable meeting new people and engaging in social activities, because they have the skills to control how they present themselves and how others perceive them. Even though many of these individuals have visible physical signs of having had cancer, such as a scar, short stature or facial hypoplasia, they do not associate their physical appearance with any social challenges. These survivors developed strategies for incorporating or not incorporating information about their cancer history into social relationships. Some are open about disclosing their cancer history, while others wait before sharing this component of their life.
When I meet people for the first time I don’t bother mentioning it [cancer history] because I feel like there’s no point because I make people uncomfortable… If they notice something different [appearance] then usually I just make up something. But if I actually get to know them and I feel like we’re becoming actual good friends then I might casually mention it and usually it just goes off really easily. And I always close [with] something like, if you have any questions or if you want to talk about things I’m really open to it. I think at that point in our relationship because we both know that we’re becoming friends it becomes way easier to talk about. [Sarcoma survivor]
These same skills were useful in dating and intimate relationships. These survivors did not have challenges with physical or emotional intimacy related to having had cancer; half are married, and the others are currently in a relationship or dated in the past.
Moving on and past cancer was relatively uncomplicated for these survivors, and therefore, they did not have the need for professional or peer support. They are aware of their health risks, but this does not factor into their relationships or participation in social activities. Their thoughts for the future are not defined by having had cancer, and most have a positive outlook.
Diminishing social isolation: it got somewhat better
Nine of the cancer survivors experienced social isolation after completing their cancer treatment during their pre-adolescent and adolescent years, but this improved somewhat after graduating from secondary school.
Social isolation after treatment
These survivors recalled spending significant time in the hospital during treatment where they felt surrounded by adults, had few friends to confide in and missed out on social activities and learning how to socialize with others their age. Beginning school afterwards was a negative and scary experience, particularly for those who were self-conscious about their appearance after having lost their hair, having impaired eyesight or hearing, or having gained weight. Difficulty making friends and extreme bullying at school exacerbated feelings of social isolation. School was overwhelming not only because of difficulties keeping up with the schoolwork but also because of the survivor's desire to fit in socially.
You’re trying to make friends, you’re trying to deal with the fact that so and so is playing with so and so and you’re not invited… then at the same time you’re not getting your math and your spelling is horrible and it takes you three times longer to read anything than anyone else and it just feels like everything is piling up on you. [Leukemia survivor]
The diagnosis of a learning disability, likely related to cancer treatment, was a side effect that not only physically isolated these survivors but also contributed to their feeling different from peers. These survivors had teaching assistants, attended extra classes for assistance when other students were participating in extracurricular activities, and sat in a separate room to accommodate special needs equipment. Social anxiety and depression intensified during high school when their desire to “fit in” became even more important.
Because of all the weight I gained on my medication and through the chemo like all the prednisone and stuff, it was very hard for me to lose the weight. So it was the opposite. It wasn’t wanting everyone in your class to understand what you were going through, like when I was in my elementary… You want to be just like everyone else. [Leukemia survivor]
To cope, nearly all of these survivors accessed formalized psychosocial support as an adolescent from a psychologist or a cancer-specific support group. While some found comfort and support in talking with other survivors, others did not benefit from this experience.
Current social life
Social isolation diminished after high school such that these survivors currently have fulfilling social lives relative to their adolescent years. They have meaningful relationships with at least a few friends with whom they enjoy spending time. The close relationship these survivors had with their parents and siblings when they were younger continued through young adulthood, with many survivors citing them as good friends and confidants.
While feelings of social isolation waned overall, social difficulties lingered for some. A few felt abandoned when their parents offered less social support, or, in contrast, felt smothered when their parents constantly meddled in their social life. Four of these survivors struggled intermittently with depression, feeling lonely or different, and some coped by isolating themselves. Others turned to alcohol, illicit drugs and partying to help them forget about their problems, build self-confidence and overcome feeling shy.
I have kind of a life with my friends and I kind of go out and do things and party. Partying is not good but it’s a factor for me because I have to let it out . . . I feel better about myself and I feel better that I’ve let myself go and let all that frustration out. Like when you’re drinking you’re not really aware of the real world, what’s going on? [Leukemia survivor]
Most had limited experience with dating or romantic relationships, and felt that their peers were passing them by in terms of marriage and having children. A number of the survivors now felt ready to meet a life partner.
I’ve never really had a serious relationship but, that’s something I would definitely want, maybe marriage… In the past it would have been disastrous, I think probably nothing would have lasted because I was looking for another to complete who I was. But now I only would want to have a relationship with somebody if I know who I am. [Leukemia survivor]
These survivors focused on putting cancer in the past and were optimistic about their future, wanting to be happy, healthy and have a family. They did not want peer support now because they wanted to “forget about cancer,” they did not want to identify as “sick” and or were “tired of complaining about problem” [Lymphoma survivor]. Even those who continue to be plagued by health issues, such as early menopause or a cancer recurrence, had a positive outlook, expecting that their health and social well-being was “only going to get better” [Lymphoma cancer survivor].
Persistent social isolation: it never got better
Four of the survivors in this study experienced persistent social isolation that began at a young age and never improved. Three of the four were survivors of a brain tumour.
Social isolation after treatment
These survivors experienced social isolation and were bullied by their peers prior to or beginning at the time of their cancer diagnosis. Feeling alone, shy, withdrawn, different, less than their peers and socially inadequate shaped the development of their self-concept.
I’d been bullied a bit and neglected by my peers somewhat up until my diagnosis and any friend that I had at the time [of diagnosis] sort of disappeared…. The neglect kind of continued because I was different. I was phenomenally [different], I was this reminder that we’re not, you know, immune to death. [Leukemia survivor]
They perceived that their social development was interrupted, impairing their capacity to function in social situations and connect with others.
My social development was sort of interrupted too because I was diagnosed right at that age where you’re starting to kind of find yourself in a way? … So I missed out on a lot of that social development so I was kind of behind everybody else in that sense too and I don’t think I’ve ever really been able to pick that up. [Leukemia survivor]
While in school, these survivors also suffered from cognitive impairments and learning disabilities, for which they were ridiculed, further exacerbating feelings of being different and affecting their ability to succeed scholastically. Despite assistance from teachers and their parents, school was difficult for these survivors. The three survivors who attended peer mental health, cancer support groups or retreats as adolescents derived little benefit because they did not relate to others nor did they form lasting friendships.
Current social life
Marked social isolation continued throughout young adulthood for these survivors. They carry the hurt of being excluded and bullied and still self-identify as different and socially inadequate. These survivors perceived that their impaired social functioning coupled with continued social exclusion made forming new relationships difficult. While one survivor receives tremendous social support from family members, the others had troubled relationships with parents or siblings that have not improved. Even though three of these survivors were either working or in school part time, they felt excluded and “not part of the group.” They also described not having meaningful relationships or enjoying social interactions.
[I] lack [the] ability to have fun even now… Maybe if I had more of a circle of friends then I would have more opportunity but I haven’t really discovered ways that I feel good about myself… Or have fun or just like let go, I always worry about what people think. [Brain tumor survivor]
As young adults, these survivors became frustrated when others did not understand or accommodate their special needs. For example, one survivor who struggled with cognitive impairment, hearing loss and anger management recounted multiple instances of misunderstandings and conflicts with co-workers, employers, acquaintances and even strangers. Dating and intimacy were perceived to be out of reach by all but one individual who was married.
Depression and loneliness were pervasive themes in these survivors' lives, which some attributed to anxiety about their health, individual events, such as loss of employment or a relationship break-up, or low self-esteem.
I have a really strong voice in my head that’s always either putting me down or, you know, criticizing… The other day I tried to come up with times when I felt good about myself, and I couldn’t really think of any. [Brain tumor survivor]
Two survivors took comfort in their faith or having pets, while another coped by using alcohol, illicit drugs, harming himself and gaming. However, some of these coping strategies may perpetuate depression and social isolation.
These survivors desperately wanted a more fulfilling social life.
Honestly, I’d pretty much do anything, somebody would have to, would have to like invite me but I’m, I like hiking, I like all the outdoor things, I’m willing to go out to whatever and I’m willing to do anything, but I know no-one invites me out anywhere. [Brain tumor survivor]
These survivors were consumed with their current life challenges, seemed to feel powerless in changing their social situation, lacked hope about their future and described waiting for someone or something to change.
Delayed social isolation: it hit me later on
Six of the survivors in this study experienced unexpected, delayed and progressive social isolation that began in young adulthood.
Social isolation after treatment
These survivors formed close friendships and for the most part, had “normal” social interactions during elementary and high school.
Current social life
As these survivors grew into young adults, they were surprised when they began to feel socially isolated.
I had a few close friends [in university] but not so much anymore. And one of my friends said something to me he was really close to me and he said, “I used to like you more back in like early university days,” because I was the life of the party and I was the happy go lucky guy and I’ve slowly lost that. [Leukemia survivor]
These survivors feel “stuck” and are struggling to move on to the next phase of their life. They encountered difficulties reaching milestones common in young adulthood, such as finishing post-secondary school, establishing, succeeding or progressing in one's career, forming an intimate relationship and having children. These survivors witnessed their peers pass them by in reaching these milestones, which they equated with happiness and a “normal life.” Over time, their social interactions diminished because friends were increasingly occupied with work and family commitments, while they were not. The survivors felt socially “left behind,” their life path diverged from those of their peers, and they could not relate to others.
The late effects of cancer treatment, including neurocognitive disability, facial hypoplasia, hearing loss, headaches, fatigue and chronic infections, limited these survivor's willingness and ability to engage in social activities.
I don’t have a lot of energy for a large group of friends or to go out. And I find going out with a large group, I mean I do get drained really fast. But, oh, another side effect I have is when I’m talking to somebody and there’s other sounds around or other conversations I can’t block that out. I still hear that, it’s regular level. I know when most people are talking they’re able to focus on that specific conversation, so it takes a lot of energy and effort for me to focus specifically on one conversation. [Brain tumor survivor]
Also limiting their perceived ability to socialize were the survivors' fears of being disliked, low self-confidence and low self-esteem. Group interactions were particularly intimidating because of anxiety about talking to others and performing socially. These survivors also struggled to relate to others because they felt more mature.
I find it very difficult to socialize with people around my age group because I’ve had a lifetime worth of experiences. So I feel I’m at a different stage in my, I don’t even know how to say it. I’ve gained a lot more wisdom than most people, so I find it difficult to relate to people who are still concerned and worried about all the superficial stupid stuff that doesn’t matter. [Brain tumor survivor]
Intimate relationships, and the lack thereof, were perceived to be out of reach for four of these survivors because they had never had a boyfriend or girlfriend and had trouble meeting a potential partner.
I’ve never had a boyfriend before, I’ve never kissed or whatever. And so it’s frustrating because, you know, my friends are growing up, moving on with their lives”. [Leukemia survivor]
These survivors did not trust potential partners easily and worried that medical issues, such as infertility or a second cancer, would interfere with a romantic relationship.
Five of these survivors experienced depression as young adults, when emotional and social challenges intensified. Although some received effective professional support, appropriate forums for peer support that consisted of social activities and networking with other cancer survivors were not available.
These survivors perceived their future as uncertain because of current or potential medical issues, such as a cancer recurrence. They were losing hope that their life would not turn out the way they had expected regarding their career, a relationship and having children, further distancing them from peers.
I try not to think too far ahead. I’m at the point where I don’t think I’ll be going back to work. It’s hard because all my friends are working and starting families and I don’t see that in my future anymore. It is tough because I think all, all little girls think of that in their future. Well I try not to think about it too often. [Leukemia survivor]