When a loved one gets it wrong

Advocacy, General 7 Minutes

The impetus for this post came from a rather difficult conversation in one of my breast cancer support groups recently. I’m not referring to any one particular person in this post and some of it isn’t even about me or my own experiences. This post is purely my own musings. At the same time, I’ve not met one person dealing with a difficult situation in their lives who have not shared how someone in their life they expected to support them, did not for one reason or another. I say this because this experience is not limited to breast cancer or a terminal diagnosis.

My mom was diagnosed with stage 0/1 breast cancer while I was a young professional, relatively newly divorced from my first husband and still figuring out what it meant to be a lawyer. In that experience, as I was trying to figure out what it meant to be a daughter to a breast cancer haver and then survivor, my role was mostly focused on the legal and financial issues. I fielded the frantic calls from my dad when the financial people tried to get him to write a $40,000.00 check so my mom could get chemo as she was getting settled into the chemo chair. I threatened her insurance company with whatever I could think of to get them to honor their contract when they inappropriately and illegally tried to deny her life saving treatment. Long story short, they paid her bills but only if I promised not to call them anymore. I happily agreed and abandoned the multiple lawsuits I was planning.

I didn’t know how to handle my mom’s illness and I more fully get that now.

Once my mom moved from patient with cancer to survivor, the emotional fallout and the trauma to her and the family became more pronounced. In hindsight, I mostly coped by burying myself in work and not dealing with the emotional aftermath. The one thing I did do was buy just about every pink soaked, bedazzled and fluffy thing I could find for her, especially if it had a pink ribbon on it.

My mom is the kindest, most nurturing person I know and she never said anything about whether those purchases helped her. Probably not. Looking back, I’m pretty sure that my behavior was much more about me than it was about her. It made me feel better to do something, anything. What is oddly out of character for me is that I didn’t spend any time confirming that funds from the sale of those items went to help breast cancer survivors or research or anything other than just lining the pockets of the people who sold them. I think that part of it was that I didn’t much care about that, only clumsily trying to show my mom how much I care about her, which is a whole heck of a lot.

Oh how times have changed.

Once I was diagnosed with breast cancer, I was the recipient of a variety of pink soaked contributions along with the t-shirts and slogans about being a warrior, fighter, etc., and, at first, that meant something to me. “Cancer picked the wrong bitch” is a particular favorite still. I confess I didn’t wear many of the gifts and I didn’t always know what to say because every slogan, every ribbon carries such ambiguous feelings for me. As I was trying to wrap my head around all of that fighting and winning and survivorship language, we learned I had actually been stage IV from the beginning. Once my day to day wasn’t just about staying alive through all of the treatments and surgeries, my world expanded into the metastatic breast cancer community.

And I got an education.

What I learned over and over was the sad truth about all that pink fluffy stuff, that usually buying it wasn’t helpful to patients or the breast cancer community. It was so very upsetting to learn that many many companies use breast cancer as a marketing technique to make more profit. Sure, there are some reputable companies that are doing the right thing but they are in the minority. I’ve spent a lot of time since my diagnosis interfacing with various companies, researching their connections/intentions, and calling out the ones who are getting it wrong.

What is less easy to deal with is when an ostensibly well meaning family member or loved one, despite all efforts to educate and share and rant, etc., still insists on labels that hurt, gifts that are about them or reacting with jealousy when you, the sick person, is receiving support.

I came across this meme recently and it resonated with me. When a family member or loved one gets it wrong, it hurts far more than a stranger or an acquaintance. When a family member or loved one ignores the affect of a terminal illness and the treatment and side effucks and behaves badly towards a vulnerable person, it bruises the soul and tears down protections dearly won.

And so, what to do? What can be done when you’ve done all you can and someone you love still behaves badly?

I certainly don’t have all the answers; at the same time, here are some ideas that resonate with me now that I’ve walked the path of family member of a person who is ill and being a terminal patient myself:

  1. Just like I got it wrong with my mom and didn’t do what was best for her, I suspect that many loved ones are acting out of their own pain and uncertainty. While it’s not easy, making the attempt to walk a few days in their shoes might help to see the situation a little differently. A cancer diagnosis does affect the whole family and despite what “should” happen, some family members just can’t see beyond their own perspective, their own pain, their own glimpses of mortality through your experience. It’s not right or good, it just is.
  2. Just like I was buried in my own concerns and had a difficult time taking on and feeling my mom’s diagnosis, I think sometimes a person who loves a person who is ill doesn’t have the capacity to handle the emotional part. While this can be insanely agonizing to bear as the person with the illness, this is about the loved one’s capacity, not the person who is ill. I’m aware that this is almost impossible to remember in the moment and giving grace while in pain and hurting is something I can’t do, yet. I’m hoping that will improve with some practice and I’ve been given quite a few opportunities to practice over the last three years.
  3. Denial is the first stage of grief and I know that some people who are ill and their families often cope by looking away. When the illness is invisible, it’s even easier to look away and behave as an ostrich does when danger approaches, burying their head in the sand. When someone is living with a terminal illness for years and years like some amazing unicorns in the metastatic community, others come to think it was much ado about nothing. As a person with an illness that requires me to stare down death every day, I get the seductive allure of denial and I confess that I have many ways of escaping from reality too; it’s just a lot harder to handle when someone you love does it when you need them in the valleys.
  4. History and the past of a relationship doesn’t just vanish when someone in a relationship is ill. Everyone carries baggage with them through life and sometimes it is legitimately impossible to lay that baggage aside no matter how dire the circumstances of the family member or loved one. Walking away from the possibility of forgiveness and reconciliation is tragic, especially when the loved one is terminal and the days are numbered to seek reconnection. Yet, the loved one or family member who makes that choice is the one who loses the most.
  5. Human capability is only so deep. Every person has their own capacity for looking at suffering, for entering into another’s suffering. As I learned and wrote about earlier in my post Entering In, it truly is a rare person who can outside of other people in the same boat.

This list certainly doesn’t cover everything. As an aside, I’m not sure any of this is relevant in a relationship where there is abuse or violence. Those issues are far more serious and anyone who is in an abusive relationship while dealing with a serious illness is free to contact me so I can connect you with resources.

At the end of the day, what I can say with any confidence is that we are all human. We are all dealing with far more than any other human can really understand. When expectations are violated, when you feel let down, when a loved one gets it wrong, it hurts and that hurt is valid. I have no solutions, I’m working through this myself. All I have figured out is that I have to take two steps back, not apply what I would have done in a particular situation and give grace upon grace upon grace.

It’s not easy and I get it wrong more often than not.

P.S. I’m not referring to any one particular person in this post except for myself and my mom where I have specifically said so. If anyone reading this post feels that I am talking to them or about them, you are probably wrong; at the same time, if you think so, maybe that will help you to think and respond differently in a similar situation. All anyone can ask another is that they make the effort to examine themselves. Namaste.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

36 thoughts on “When a loved one gets it wrong”

  1. Well that was as hard to read as it was, probably, for you to write. I ‘m pretty certain I have let too many people down along the way but it is certain that at the age of 75+ I got a lot of learning to do. I’m in the age group that makes terminal illness a certainty. Excellent work Abigail.

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  3. This post is so sad and brought a tear to my eye. I’m pretty sure that I myself have been guilty. We let everyday life get in the way until it’s too late. In the future, I’ll keep this post in mind and make an effort to do better. Thank you, Abigail for bringing attention to something many don’t and won’t realize until either they’re stricken with an illness or until they lose a loved one.

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  5. This really resonated with me! I can particularly relate to your meme about family traveling miles to bury you but won’t cross the street when you’re alive. Throughout the last year of my health worsening not one family member of mine has come to visit me in the hospital or at home, yet I am expected to go visit or call them because that’s what I have always done. I agree with you that people don’t always “get it right” and don’t know how to handle the emotional toll of someone they care about living with a terminal illness. But I have found those people in our support system who do support us in the way we need, shine a little brightness on an otherwise difficult road.

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  7. Extremely moving and thoughtful post, which resonated with me far beyond your subject into a world where–what if we took 5 minutes or more to walk in another’s shoes and try to understand. Hopefully we would reach out with compassion and more understanding. And, yes, you did leave me teary eyed.

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    1. I’m so glad it resonated with you even outside of the subject matter. A friend said to me today … human beings are really good at hurting other human beings. She’s right, we are. Compassion and understanding are so key. Thank you for reading and commenting. Love and light to you. ❤️

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  8. Sad, but true. I had a colleague who thought I should just “get over it” when my cancer treatment ended. She thought anyone who got BC got the same disease. Recently, I had quite to hard discussion with a sister who’s an ED director at a large Chicagoland hospital about the idea of deciding who’d get the last ventilator if there were two patients, one of whom had Stage 4 cancer. She seemed flippant when she said those choices had to be made and it sometimes didn’t go in favor of the Stage 4 Haver. I know she loves me, but how awful. I’m still reeling from it. A great post!

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    1. Oh wow, those are hard conversations. Why does it seem that having a terminal disease means every conversation is fraught with these awful awful thing!? I don’t have the answer, but I do know that talking to people who get it, talking to those who care enough to see how the conversation affects you, those are the conversations I want to have. Love and light to you.

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  9. I lost my 2 best girlfriends when I was diagnosed metastatic. They were there for me the first time but my MBC diagnosis didn’t fit their narrative. It was inconvenient for them and they were dismissive of the dire nature of a terminal illness. Long story short, the friendships ended and I now realize 5 years later, that they never really had my best interest at heart and didn’t love me. I’m ok with it now. I don’t miss them in my life and have met so many wonderful and true people since and because of my diagnosis.

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  10. Abigail, forgive me if I am overstepping my bounds here.
    You ended with namaste. I meditate daily, a lot of it guided by wise heads, and one thing I value is the lovingkindness that we send both to ourselves and others. It seems to me that it’s irrelevant whether your mother enjoyed all the fluffy pink stuff. You fought for her, took care of vital matters that were surely concerning both your parents, and expressed your love. And she knew it, so I’m sure she valued your tangible gifts along with the more substantive ones. The fact that you learned to be diligent about where the money for the fluffies goes is good, but not doing so then is not something for you to spend an iota of energy regretting now. As you wrote to me recently, 20-20 hindsight.
    Once again, you’re speaking of expectations and communication. They are interlocked, and I can appreciate the hurt because I’ve experienced it. Hard though it is, we just have to leave those suitcases filled with regrets, and worries, behind us, thereby lightening our loads of excess baggage.

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    1. As always, I appreciate your thoughtful and kind response. She told me something very similar. I’m trying very hard to live the meaning of Nameste, that we are all connected, that I honor others differences and who they are. It’s not easy, but I’m learning. Love and light to you.

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      2. By the way, one off the things that helps with namaste is to rid yourself of “trying very hard.” You are a very good person doing your best under the most difficult circumstances a person could face. You are also a striver, so I understand your “trying very hard.” Just be you, give yourself lovingkindness for how remarkably productive you’re being—and breathe-e-e-e. End of sermon. 💕🙏

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  11. This post really resonates with me. Most of my close friends and family live multiple states away, although I do have a few relatives who live relatively close. In my now over 2 1/2 year cancer journey I have received far more support from friends than family, even though they are also far away. I try to accept that, but it’s sometimes difficult. Overall I am so appreciative for the support that I DO have.

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  12. Hey Abigail! I am a sixteen year old teen blogger, who aspires to be a best-selling author. Though you might think I’m young, I am more of a practical person and so my approach to life is based on mature thinking. Your blog and your posts have always motivated me and I’ve tried bringing such content on my blog as well. You may have read some of my posts as you had followed me long back and had commented on my posts. I hope you enjoy reading my original content. But I just wanted a favor from you.
    As I am a teen blogger, I needed some motivation. Can you please nominate me for any award of your choice – or if not, can you please at least mention my blog in any corner of your posts? I want the world to read my stories, and I assumed that the best person to spread the word would be you as I have followed you very closely and believe you to be my role model! Please reply to this comment as it would mean a lot to me!
    Lots of love from India!
    GBU 🙂

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  13. You already know how much this post resonates with me. Thank you for putting it into the words I can’t. It’s still too new and jarring for me to write about yet. But it helps that other people get it. Nothing replaces certain family members who are meant to fill a specific role, but at least we make new, different kinds of connections that become family, and this helps when you struggle with your given family. I’m grateful for my “sick people” family and the support I get when I do need family and they aren’t there.

    Great piece, Abigail. I have a feeling this one will resonate with a LOT of people. Especially as we are coming to the 4th month of hiding from COVID-19, and the world is reopening while people don’t understand that we, however, are NOT reopening.

    Thank you for becoming part of my extended family. 🙏🏽♥️🙏🏽

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  14. Pingback: When a loved one gets it wrong – I'm Still Breathing!

  15. This is unfortunately true. Someone very close to me is battling with a terminal illness at a young age and they often say that they feel like they’ve been abandoned and let down and a few of them atleast simply seem like a disappointment because they couldn’t communicate with them rightly or enough during this time, partly due to their own lack of knowledge about how to interact. In the end though it’s pretty simple all you to do is be there and treat them like you did before only considering their needs better this time and show them empathy. It’s nothing to be scared away by of you do that it only upsets everyone. Thank you for sharing!

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  16. You revealed the truth of the people who take excess baggage and not try to spend time and understand other people who are going through difficult situations !! Every human thinks differently !! 💜

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