When I received my cancer diagnosis, I felt I’d been hauled into a horror movie in which I was playing a key role, but hadn’t been given the script. I felt lost, mortal, frightened. The people and landmarks around me looked the same, but no one could understand me.

People I had known all my life started to disappear. Those who stayed began to treat me differently. Their love was still there, but fear crept in between us. No matter how hard they tried to hide their fear, it lurked into their behavior. It showed on their face. It showed in the words they used. It showed in the distance they maintained. It showed in their need to fill every second of silence.

At the societal level, I discovered that my status had also changed. I now belonged to a downcast group. The group of the sick, the pitied, the downfallen, the avoided. The people we write off because they are too sick. The people we fire because they have cancer. The people we avoid because they make us feel uncomfortable.

But what troubled me most wasn’t being alone or avoided. Not everyone deserted me. I still had friends who stuck by my side. I could call on them when I needed company. What troubled me was a permeating feeling of loneliness that never went away.

It was different than the loneliness I had experienced before. It was more subtle. Yet more pervasive. I couldn’t get rid of it by calling a friend. It followed me around like a never departing shadow. Even when I spoke to my family.

It is not until I shared my experience with other cancer patients that I learned it was a shared experience for cancer patients. Still, it took me a long time to put my arms around it. If I was not alone, then what was this feeling???

The best way I can describe it was emotional isolation. The isolation that resulted from not being able to share my experience at a highly painful time in my life. I was longing for my suffering to be heard and recognized. But people could not do that. Every time I tried to share my pain, I was met with silence or judgmental advice. “You need to be positive if you want to beat cancer,” they said.

My life was filled with suffering. Yet, no one wanted to hear about it. “Tell me happy news,” they said. Or “What else is going on besides cancer?” Positive stories were the only thing people were willing to hear. Everybody knew I had a life-threatening illness. Yet, they preferred to live under the deception that I wasn’t that sick. “Get better soon,” they said as if I had a bad cold.

People’s inability to make room for the reality of my cancer experience made me feel invalidated. I felt like my true self had no seat at the table anymore. The only part of me people wanted to see was the cancer warrior who smiled on photos and filled them with hope. That was such a small part of my experience.

I discovered that our society has no healthy way of integrating cancer patients and people living with serious illnesses. At the beginning of my cancer journey, I mistook people’s behavior for a lack of empathy. But later, I realized I was wrong. It was not that they were not empathetic; they were uncomfortable. Minimizing my condition was a way for them to manage their fears. 

Speaking to a cancer patient is hard because, as a society, we are not good at being present with what we cannot fix. Our education prepares us to become fixers. Our culture rewards fixers. So when we come face-to-face with suffering we cannot fix, we are at loss. We continue to bestow fixing advice and platitudes because that’s all we know how to do.

At a time when I most needed to be heard, I felt constantly invalidated. It made my cancer journey much harder to bear. Now, as a cancer haver, I am careful to pause and acknowledge the suffering of others. I go by the principle that if people are brave enough to share their vulnerability, it is because they need to be heard, not lectured.

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36 thoughts on “Cancer is the Loneliest Place

  1. I share the same experience. When I was diagnosed with prostate cancer, several of my good friends disappeared. Although, ever since my diagnosis, I have met many wonderful people and have become extremely close.💕

    1. Thank you, Gogs! My loneliness wasn’t so much about being alone. I tried to describe the passage we all go through, when we realize that the people we are closest to cannot understand us anymore. To give credit to my friends, some of them made the effort to understand me (after reading my blog) and I am grateful for that!

      1. That’s wonderful Sylvie. Your writing will help so many people, and I’m looking forward to reading your book.

  2. Yes, this is soooooo true! As a stage IV patient, I am often surprised at how much other “cancer havers” (I love this term, btw) who are early stage are often not willing to hear about my experiences where they diverge. It’s a weird and odd place to be in. I find that it has been those people who didn’t care about the relationship as much as I did who have fallen away. It’s hurtful, absolutely, but I’ve also realized that their absence has given me the room to make new friends, to connect with others in a different way and my life is richer for that. Love and light to you!! ❤️

    1. Thank you, Abigail, for sharing your experience as a stage IV patient. I’m sorry to hear that. It is so odd indeed. In its own very strange ways, cancer divides us and brings us together. I’m also grateful for the transformation and growth I gained from this painful experience. Love and hugs to you!

  3. I’m proud of you for writing this – I’m glad you gave us a voice! This is a topic I struggle with and understand how we can all feel abandoned by those in our lives who can’t deal.

  4. Your thoughts are very illuminating for me and others. People want to hear positivity and optimism; and they don’t know how to process the real, raw hurt that cancer patients endure. Keep making us smarter and better at understanding the experience of those who are critically ill.

  5. I’m appreciative of your sensitivity and deep insight into your experience with cancer. Much of this is applicable to other serious, chronic illness. Thank you.

  6. “If people are brave enough to share their vulnerability, it is because they need to be heard, not lectured.” Thank you for articulating it, Sylvie.

  7. Spot on. I’m grieving my normal life and in shock with this diagnosis. I thought I was healthy until I was told I had cancer. Now that’s all my world revolves around. I have no normalcy no control. Folks have no clue and say don’t miss the things you use to enjoy, just pray and read your Bible. That’s better than what you did anyway. Makes me so angry.

    Courtney
    Brain Cancer

    1. Dear Courtney, my heart aches reading your comment. I am so sorry you are going through this. A cancer diagnostic is hard enough to bear without adding layers of deflating conversations. These remarks are so invalidating. I understand your despair and anger. Sending warm hugs to hold your pain.

  8. I really loved the article. I was totally unprepared for the loneliness and depression that accompanied cancer. I think we need to talk about this more. Thank you for addressing it in your post.

  9. For those of us who know and love someone dealing with cancer, what do you suggest for how we approach you? I’ve often read that many cancer patients want to have conversations and interactions focused on something other than their illness. How can we sensitively find out what the people in our lives need at this difficult time? I need some suggestions so that my loved one doesn’t experience the isolation you so deftly described. Thank you

  10. Sylvie, thanks from the bottom of my heart for delving so deep into your experience.It resonates so true with me on my five-year cancer journey. It’s not easy to be so open, as you have chosen to do, but it is the brave thing, the honest thing, to do. And you have spoken for so many in the survivor community. Best wishes!

    1. Thank you, Ron, for your words. They go deep into my heart. It takes enormous courage (indeed) to share one’s vulnerability so openly. It is not easy. My primary motivation is to help others. Someone has to share these stories to give voice to the unvoiced suffering of cancer patients.

  11. Sylvie, So happy to have found your blog. This resonates with me so profoundly. I wrote a post shortly after my diagnosis trying to explain to people how to talk to someone who is going through trauma. I felt so alone. And now that I’ve had a good report and a clear scan I still feel very alone every day. Everyone wants to wrap up the past year and put a bow on it and say, “Well, that is over, life goes on.” But it doesn’t, not like that. I am weak and immuno-compromised and full of anxiety. But I cannot confide in very many people (almost no one!), and everyone wants the positive. So I totally understand your post!
    My blog is a chronicle of my cancer experience and is called “ayearofweather.blog.” I would love it if you could check it out. I will continue to follow your journey, my friend.

  12. July 2020 will be 5 years since my breast cancer diagnose. Went through it all (bilateral mastectomy, chemo, radiation). The treatment came and went and my prognosis is excellent but the aftermath cancer left behind has been the hardest. Like you, it’s incredibly lonely and isolating and friends/family don’t necessarily get it or hold that space. My relationships have changed, I’ve changed and that’s ok. I miss the pre cancer me and in ways grieve that, this me sees life through a whole new experience and I get to rewrite my journey post cancer. That in itself is amazing. Much health and happiness to you. Glad I found you : )

    1. Thanks Denise. It is nice to meet you too. I too have a compromised immune system and have been sick every week, with one thing after another, since treatment. It takes a lot of time and effort to adjust to the new normal and rebuild one’s life. All the best to you!

  13. I’ve had cancer twice. First time I was married 2 years and I was 19 he was 21. He was amazing! Went to every appointment, stayed in the hospital overnight with me for 2 weeks. Just with me all the time. This time Im 62, it was breast cancer 2 years ago. My best friend went to most all my appoints and when she couldn’t, my daughter was there. And my Ex was there most of the time also. The difference at the end of the day I was alone. I will say it was much nicer having something there with you. Even if the don’t fully understand at least they try. But, having said that, there are things you have to deal with and sort out yourself.

  14. Sylvie,
    Your gentle and direct style helps us see how balancing hope and “sitting with the pain” is critical to being a caregiver and a support person to those who are suffering. As you said, the focus on fixing is a by-product of western educational system. It’s a hard one to change (speaking from experience, my own bias). Thanks for writing about it and creating an awareness.

  15. Wow….I didn’t know this was what I was experiencing until I read this. Thank you for sharing your thoughts and feelings so the rest of us dont feel so alone. Cancer is a lonely place to be. 💙

  16. So nice to have found your blog. You added a facet to the multi sided experience of having stage 4 cancer. I think it’s also mortality itself. No one wants to look in a mirror and see their own mortality staring back at them and we become mortality mirrors. More or less it’s the same sad story for nearly everyone dealing with a cancer diagnosis regardless of the prognosis. It’s lonely to be sure, but it’s more than that as you point out. I hope you’ll read my blog too. I think we share many of the same views. Stay well. Stay sane. Stay home.
    Much love
    Ilene
    Cancerbus.com

  17. I actually had someone tell me to take an Ativan when I tried to share how I felt during cancer treatment. They couldn’t sit with me and my fears and would have preferred I medicate myself than tell my story. It is truly an isolating experience.

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