“I had not, in 5 years, met another single cancer survivor in my age group. I felt extremely isolated and felt that this was a need to be filled.” -Matt
Living with advanced illness affects how we connect with family, friends and our broader communities. What we say to each other matters, and maintaining and nurturing relationships takes time and work. We talk here about figuring out how to stay authentic and connected to others. We also discuss our often complex relationship with our health care teams.
Advice from Health Care Providers
Relationships with others
Many people do not associate teens and young adults with advanced illness (and how wrong they are!). In fact, many people have a very limited understanding of advanced illnesses in general. This lack of knowledge can create situations where it is difficult for others to even recognize or acknowledge what you are experiencing. Even when other people do begin to see what you are going through, sometimes they express fear or denial which prevents you from getting the understanding and support you need and deserve. Fear and denial are powerful emotions. Some people may feel fear around you because they don’t know what to say or they don’t know how to best support you. It’s understandable that they could be worried about what will happen to you. Others might be afraid of illness and want to distance themselves from it (which obviously distances them from you too). People may express denial because they simply can’t cope with the facts. They might also be denying the reality that they could get sick someday as well. Let’s get one thing straight – you are not responsible for the fear and denial that other people are experiencing. You may be experiencing a lot of these same emotions and you should be allowed to focus on self-care and dealing with your own stuff. It is often hurtful when people react with fear and denial. Hopefully, your family and friends can come to terms with their emotions and support you in meaningful ways. If you feel comfortable, sharing your story with them might reduce some of the fear and denial. This may make things easier for you. That being said, it’s not your responsibility to soothe their fears. All this fear and denial can really cause people to say unhelpful things, even when they mean well. Anyone from your closest loved ones to strangers might think they need to say something to you. “But you’re so young!,” “I’m sure you’ll beat this!,” “All you need to do is think positive!,” “I know what you are going through...,” “Don’t give up!”… Where do people come up with this stuff?! There is a big taboo around advanced illness and death in our society, so this can lead to many awkward and hurtful conversations. You can choose how to react each time, whether it be ignoring them, explaining to them what you are going through or just going along with it because you want the conversation to end. It’s up to you, but try to respond in a way that meets your needs.
Relationships with friends
The impact of your illness on your relationships with friends might be one of the most concerning issues that you are facing. It can feel super isolating to be dealing with illness when your friends are not experiencing the same thing. Some of your friends might distance themselves, either on purpose or without thinking about it. They might be uncomfortable around illness and are not sure what to say, so they stop reaching out. This can be hurtful because it cuts you off from people you thought would be there for you in a time of need. You might feel that you get labeled as the “sick friend,” which is a crappy label to give to someone. You might also be the first one in your peer group to deal with something like this and some of your friends may have no idea how to react or support you (which is less likely to be the case for a group of friends who are a few decades older). Your friends might also say “tell me if you need anything,” which is well-meaning but is usually not helpful because it requires an extra step to reach out to them and ask for help. If you are feeling you don’t have enough friend supports, it can be difficult to make new friends at this point in your life as well. Other people may be uncomfortable around illness or your health prevents you from fully participating in the same activities as your peers. If you’re getting treatment, you are probably not seeing many other young people while you are there. All of this is happening at a stage in life when teens and young adults want to be more independent from their parents and caregivers, and peer relationships are becoming more and more important. There may be people who reach out to you who you didn’t expect and that can be meaningful. In other cases, you might want to be left alone and some people can be so persistent that it becomes aggravating! Or maybe you feel like YOU are the one supporting THEM. It’s a cliché, but some teens and young adults say that this is a time of “finding out who your real closest friends are.” Even if you do have supportive friends, it is still possible to feel isolated throughout all of this because it can seem that no one else really “gets it.” So what can you do about it? For starters, it’s ok to become more selective about who you spend time with. Some people may still be your friends, but you don’t need to spend your time with people that leave you feeling annoyed or drained. You also don’t need to be anyone else’s personal counselor. Try setting healthy boundaries and investing in relationships that make you feel good. Social isolation is so common for young adults living with advanced illness, but there are some great resources out there that you can connect to.
The power of community
Teens and young adults, when diagnosed with cancer, are hit smack in the face by an overwhelming feeling of isolation. It is wonderful to have the support of friends and family, but nothing really compares to being supported by people who truly get it. Finding someone who can truly relate to what you are going through and being accepted for who you are and how you are feeling without judgment is often a bridge out of isolation. Participating in digital and face-to-face programs with other adolescents and young adults often leads to not only a sense of community, but also a sense of safety, relatedness, and support. Young Adults Cancer Canada (YACC) is one organization that connects young adults with each other so they feel supported and understood on a deep level by their peers. The YACC community is diverse, from newly diagnosed, to living with terminal cancer. The richness that comes from connection and peer support is invaluable and the entire team at YACC is committed to taking care of this community, listening to its needs and making it grow. No young adults should have to deal with cancer alone and YACC has their back, always.
Relationships with parents
Your diagnosis might have impacted your relationship with your parents or caregivers. It may have had a negative or positive impact or no impact at all. This often depends on what your relationship was like before getting sick – have you been pretty open with your parents in the past? Do you feel emotionally close to them? It’s also possible that you had little or no relationship with them before getting sick, or one or both of your parents has already died, which can make things even more difficult. For many teens and young adults, living with advanced illness can be a threat to independence. You might have to move back in with your parents (if this is even an option), you might have to delay moving out for the first time, or you might find that your parents start showing up at your place WAY too often. In some ways, this might feel like “forced” dependence. It can be extra difficult to accept when you see other friends moving out on their own and living independently. Even with the threat to independence, it’s possible that your parents are your biggest supports. Maybe they help you out emotionally, physically or financially, depending on your circumstances. On the other hand, maybe your parents are getting a bit older and you are helping them with their health needs on top of dealing with your own! Or maybe you have your own young children and you are part of the “sandwich generation”. This “sandwich” is not as delicious as it sounds because you are caught in the middle caring for your parents, your children and yourself. Parents and caregivers can react in tons of different ways. Understandably, they might be worried about you. They might be highly anxious or “helicopter” parents. They might be distant or estranged. They might look to you for their emotional support, which is not your responsibility to provide. Or they might respect your autonomy and provide support when needed. You know your parents the best, so it’s up to you how you want to navigate these relationships while protecting your independence, privacy, and individuality.
Loss of independence
Many teens and young adults fear losing independence and becoming a burden on family members or friends as their cancer progresses. Some move back in with their parents for additional support. Others may live independently, but their parents have a larger role in the young adult’s medical care, including making medical decisions or basic care such as dressing or bathing. This loss of hard-won independence may be difficult for some to contemplate and accept. Young adults in serious relationships may fear changes in the dynamic of the relationship, shifting from being equal partners to being dependent on another individual for daily needs as well as emotional support. It is important to remember that the people surrounding you are willing and able to help. They likely also feel a sense of helplessness in this situation. It is okay to accept help and form new relationships with people that may be able to provide additional support to you and your loved ones (parents, spouses, significant others). There may be other people that are unable or unwilling to be a part of your life as it is changing due to illness. Ongoing, open discussions with others are essential to maintaining your personal identity, even as some of your independence may be reduced. Tell your loved ones what your personal needs are, from physical needs such as bathing and transferring to emotional needs like empathetic listening and venting. Be clear with others and set boundaries in terms of what help you are and are not willing to accept from certain people. Utilize available resources to ensure all your needs are being met. This might be a health care aide for personal hygiene needs, a psychologist or social worker to discuss your emotional concerns and needs, or a chaplain to discuss your spiritual questions.