Over the last two years, I have slowly stopped writing There are a lot of reasons for that, but I think in general there has been a slow quieting of my life. Writing used to be a way that I would express my thoughts and I felt entitled to share them, whether anyone read or not. That has changed. And I would like to tell you why.
I am a cancer nurse. I am now a cancer nurse practitioner. I am experienced in the world of bad news. I am comfortable being with people in times of great sadness and confusion. I am also used to great escapes and great surprises. It is the thing I love most about my job; living in the reality of a situation, being with people at these moments, both good and bad. If only this had prepared me for my own recent challenges. I have struggled now with fertility issues for about 1 year. Although I understand the big chasm between fertility and cancer, there are similarities that are there that have struck me. I have kept very quiet about my struggles. I have not shared about it. I have felt great shame about it. And now I am ready to talk about it
Obviously, cancer is an incredibly stressful diagnosis to cope with. Patients ask “Why me?” and the only answer is we don’t really know. Patients ask “What did I do wrong?” and the answer is usually nothing. Well meaning friends and colleagues who find out about a cancer diagnosis say dumb things without meaning to be hurtful. The internet suggests magic cures that provide hope but also add to confusion. The diagnosis of infertility is reported to be as stressful as the diagnosis of cancer, AIDS and heart disease. My personal response has been the same. Why me? Who knows. What did I do? Definitely nothing. Friends say cruel things, the internet promises a cure in a pill.
What I would like to share is what I have seen in my own experience and in the experience of my patients. After 5 years of seeing people face cancer, I have been privileged to witness some of the lessons learned. Now that I have struggled, I feel that there are some similarities that are worth mentioning. I have seen what we lose and I have seen what we gain.
What you will lose:
- You will lose some relationships along the way: This is true for me and for my patients. Not all relationships are for the bad times. And when I started managing this new challenge in my life it became obvious that there were people I loved that were not coming along for the ride. Some people were blatant. I told them, they stopped calling or reaching out. Some people were more subtle. I told them, they couldn’t relate and didn’t try to. They made no room for me at the table to be in the place of challenge that I was. My patients tell me the same thing. There will be friends that will not or cannot make room for you at the table.
- You will be seen as a something to fear: This is hard to swallow. In the midst of a scary diagnosis, you become something to fear. People don’t want to be around illness. My patients tell hilarious stories about still being whispered at “How’s your cancer?” We laugh about this. This rejection, this fearful judgement is something I now know. I have felt this when I overheard a conversation about someone who was newly pregnant and felt scared to tell me. I understand that this was well meaning, but to be seen as something scary because of what I was dealing with was alienating and sad. And it made me not feel safe to share anything. If I was a fearful infertility monster, the least I could do was keep my mouth shut.
- You will lose your sense of the future: Everyone loves to plan for the future. We spend most of our lives doing it. A diagnosis like cancer or infertility puts all that on hold. All of the sudden, the days and hours become much more precious and the future becomes much more unknown. This can be disorienting, especially for those of us who have always been planners.
- You lose control of your body: What was once ours is now the doctors’. We turn our bodies over to the shots, the meds, the procedures. We turn over the implicit trust we have for our bodies over to a new trust in our doctors.
- You will be blamed: No one wants to admit this, but limited people in your life will blame you. What did you do wrong? You were too angry? You were too controlling!. Healthy people will find a way to blame you. So with fertility issues you will be blamed. I once heard a woman explaining the failure of her friend’s IVF this way, “Well, she and her husband had so many issues with sex it was inevitable”. I don’t think I have ever heard anything crueler. I hear this from my patients that some people subtly or blatantly blame them for their diagnosis. Nothing, absolutely nothing, is crueler than this.
What you will gain:
- Your A-Team: You will find that as the friendships that are not strong drop away, other ones deepen. People you know will step up in ways you never imagined. Siblings and friends become more important than ever. These people, near and far, in person or over texts, become the lifeline to sanity. They will laugh and cry with you. They will give you advice and listen. They will celebrate and grieve with you. They will reveal their true colors. They will show themselves as the kind, loving, giving, awesome people that they are. There were quite a few people who surprised me with this. And this is truly one of the gifts of disease: the ones who stay are the ones who matter. They are the ones that will make your life better and will make you stronger. Who can really ask for more?
- A better relationship with your partner: Going through illness with a spouse or partner puts enormous strain on things. But it can also be the cauldron that burns up the bullshit that ruins most relationships. I think about the many spouses I have seen that lovingly care for their sick partners and laugh about the indignities of chemotherapy or surgical recovery. This brand of kindness is exceptional to see. It is also exceptional to experience. My husband and I are kinder, sweeter, nicer and better to each other than I could ever have imagined. This is the kind of blessing that I was not expecting.
- All you have is the present moment: With time slowed down and the future on hold, there is nothing else to do than notice how sweet life can be. If I can get out of my head, then I notice the dew on the flowers, the sun shining, the beauty of a song, the sweet taste of food. With a hard diagnosis, it often hurts too much to think and worry and there is only relief in the present moment. I have always wanted to trust in the moment and now I do. Now I know it’s probably the only thing I can do.
- Surrender: In the end, a rough diagnosis is all about surrender. Sure, we try to “fight” and we say “this sucks”, but the reality is the only way through this is acceptance. Surrendering control to something larger, whether that is science or faith, is the only way to move through this.
- You will be a resilient badass: Bad news means showing up. There is nothing like a bad scan or bad labs to make you show up for your life. Only those of us who have been there know what it is like to walk out of a doctors office with bad news and feel the sun and think, “Ok, what are we going to eat for lunch?” That is resilience. That is facing the day. I see it every day with my patients. I have been there too.
I want to take a moment and say that I get cancer and infertility are two very different diagnoses. But they are still two things that are clouded with shame. My patients have shown me how to face hard news and continue to live. If you are struggling with a rough diagnosis, just know that you are about as badass as it gets. Nothing will make you stronger. Nothing will make you more vulnerable.
Finally, I will tell you that I have recently had a miscarriage. I was so lucky to get pregnant and we were so happy. To have lost the baby after such a long struggle to get pregnant seems like a cruel joke. But I know it is not. I know that I am accompanied in this journey, even in this very hard loss. I have my A-team, I have my faith, I have my partner and I have hope. Even on the worst days, like today, I still have hope.
Thank you for reading. Thank you for kindly hearing my words. If you have a kind word to share or some love for me, please comment. I find that with this recent loss, I really need people to reach out.
PS: need help dealing with infertility? I owe so much of the gifts and strengths I found to Rosanne Austin. Please check out her website: frommaybetobaby.