Episode 235: Unseen and Undervalued: The Struggle of Caregiver Validation and Recognition

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Episode Transcript

Every time I walk into my husband’s regularly scheduled oncology visits I am filled with anxiety and hope… but mostly anxiety. The power one sentence has over the trajectory of my life is massive. However, for the past few appointments everything has been stable but I’ve begun to notice that I’ve been leaving these appointments feeling… unseen.

Let’s talk about caregiver validation

Intro

My husband is on a 6 month oncology cycle which means twice a year he has to go in for a couple of hours of scans and tests and then a follow-up with his doctor. Usually my focus is on the stress, anxiety and build-up to these appointments. Today, as I begin to prepare myself for his end of follow-up,  what comes to mind is how I feel after walking out of the doctor’s office. Especially when it isn’t a Holy Shit type of appointment. 

You know these appointments… the ones where you know you need to cry about the new information you were just given about your loved one but your body is in shock and isn’t responding as quickly as it usually does. The ones where you walk out dazed and suddenly find yourself at the car but don’t remember actually leaving the doctor’s office. You get home and maybe sit in the car a second too long, look at your loved one next to you and wonder, how the hell are we going to get through this.

Not those appointments. 

Those appointments don’t leave any room for you to think through how you’re placed in your loved one’s circle of care. You’re literally thinking - how do I keep this person alive.

Today I’m talking about the appointments that go ok. My husband has had a few of those recently and in episode 221 I share how unsettling that felt in the beginning. However, I have begun to realize that after these appointments I’m no longer strategizing time frames before surgery or analyzing if I need to advocate more for him or if the treatment plan feels good. I’ve noticed that I feel an emptiness on the way home that I hadn’t experienced before. 

Have you ever felt that? Does it feel like you went into a 6 month review with your coworker and they got all the credit for everything the two of you did together to get to this level of achievement and you’re just sitting there to what - cheer them on? 

Does it feel like you took your award-winning brownies to the school bake sale but everyone assumes the PTA president made them because she’s the one who set them on the table? Spending all night hearing how awesome Sharon’s brownies are? 

Or maybe when you finally remember to put the soap in the dishwasher and actually run it but no one in the house acknowledges or even notices this win, even though they always complain about how you always forget to do it. 

Does your caregiving make a difference at all if no one sees it? Is it like the tree falling in the woods analogy? 

Are you feeling some friction, irritation or resistance to even thinking about this? 

I have to be honest I feel it right now. I instantly want to tell you that almost all of my husband’s doctors have been excellent. I want to excuse them for not placing importance on all that I do during the year between the 15 minutes we see them every six months. 

How often are you told or made to feel that you should stay small. That your caregiving should never strive to be bigger than it is. No one wants to hear about it. Stop bragging about what you do for your loved one or so what that’s what you’re supposed to be doing. 

I cringe at the possibility of hate email and ugly responses I’ll get from people online when they hear these words and the judgement that might sting for just a minute before I let it evaporate

I hear it already… I don’t have cancer why am I complaining. I’m not the one who is battling a disease so anything I do is overshadowed by everything my husband has to go through to live. Stop complaining you’re being ungrateful, selfish, and self-centered.

I’m not making it up. I’ve been told these things with past episodes and posts. From complete strangers who are usually not caregivers and feel they have a right to an opinion. 

How interesting the cycle of blame and judgement is for caregivers who are expected to give all of themselves to a role they didn’t ever expect to have and then the social bullying that shows up when they just want to speak their truth. Then people say they never hear about what it’s like to be a caregiver so they assume everyone is ok. But then caregivers don’t see themselves in other people so they fear they are the only one’s experiencing caregiver specific issues. So they keep everything to themselves because well… they are faced with the blame and judgement and we all just continue playing our part in the circle of shame.

We hide so much of our caregiving from the world because most of us don’t have the energy to fight against the social pressure to stay in our very small lane.

Sometimes the only people of reason we seem to come in contact with are our loved one’s doctors and when they silently perpetuate what society overtly tells us to do we start to believe we are wrong.

As I prepare for our next 6 month appointment… because it is our appointment, I feel the pull  to invalidate what I will almost undoubtedly feel when the oncologist leaves the room…

Small. Inconsequential. Selfish

Have you felt this? Did you ever just want the doctor to look you in the eye and say, “you’re doing a fantastic job”?

I’m not even talking about a check in with the caregiver and see if they need anything, offer them help or open a window to have a conversation with them on how they are doing. 

Just 3 seconds of validation.

I know that isn’t too much to ask. 

You may be thinking, well he’s a busy person. So many people to see in the day. Why should you expect him to spend any of it on you?

I’ll tell you why… unless he is responding to a my chart message, my husband and I are on this journey together alone. We are stumbling through cancer together just like everyone else does but we’re doing it as a team. My role in supporting him in living with cancer, enjoying his life, being on a constant look out for signs or symptoms that something is going on. Problem-solving solutions to roadblocks he comes up to while trying to be his wife at the same time. Being there when he needs to talk about fear. Holding him when words can’t convey the emotion. Occasionally checking in to make sure he is on top of his medications. Helping him advocate for himself when I can’t. Literally being his partner in life and his partner in cancer and I can’t get a head nod on the way out?

To the people who have something to say to judge, try to put me in my place, want to make me understand how selfish I am for thinking this… Kiss my ass… I don’t care.

I know there are caregivers in the world who leave appointments feeling this way and their caregiving is more active than mine is right now. I don’t care if you are constantly changing adult diapers, cleaning and dressing open wounds, supporting your child’s need to have a temper tantrum because he is developmentally delayed, sitting with your spouse during chemo treatments or living your best life with an occasional 6-month oncology appointment… what you do deserves to be recognized

How hard is it for people in our lives to simply say… I can imagine how hard caregiving is for you and I just have to say I’m really proud, fortunate, inspired by how much you do and the strength you have to keep going. 

Because we are the ones that keep things going. I don’t care that I don’t have cancer. I am a cancer caregiver and live as my own person. My caregiving matters and it deserves to be acknowledged. 

Your caregiving matters, a lot, and you should never be made to feel like it doesn’t Every doctor’s appointment should be a mini job review so they can tell you what in your caregiving has been working and what hasn’t. Or acknowledge some or all the things you’ve done since the last time they saw you. 

But here we are talking about just wanting to feel seen. 

I’m not talking about them making you feel good about being in the same room with them. Personality and bedside manner is a strong game for certain doctors and it can be a big distraction. 

I’m talking about taking just a moment to acknowledge all that you do. 

We are not the people we care for. We live as separate human beings and what they are going through should never be used to invalidate the things we feel. 

Not feeling validated when I leave an oncologists office is a problem for me. 

I should never feel it.

You definitely should never feel it. 

We all deserve to have not only the doctor’s in our loved one’s care team but people in our personal lives acknowledge the importance of what we do. 

There is a big information problem when it comes to educating the general public on what it means to be a family caregiver. But quite honestly why should caregivers be responsible for their own awareness campaigns? 

All it takes is a half hour of sitting down and spending time with a caregiver to get a tiny glimpse of what caregiving is like for them. A glimpse should be enough to start to know how difficult it is for them and it isn’t too big of an ask for someone who cares about you, and loves you to just sit and check in. 

In all honesty I’m not here for them. I’m here for you and I want you to know that I also have trouble with not feeling seen. It’s a struggle to make myself big and on some days difficult for me to allow myself the vulnerability to share these stories with you. However, in sharing today, I hope to help you see you aren’t alone in what you feel. It’s acceptable for you to be unhappy with feeling undervalued and taken for granted. It’s good for you to want people to be better and doesn’t need to be accompanied by shame. 

We all deserve to be validated as caregivers. Not only by medical professionals but the people in our lives and society as a whole. 

The first step, for us, is understanding this. 

Demanding more. 

Advocating for ourselves and all we do. 

Because it takes a ton of work to be caregivers and try to participate in the world we live in.

It takes a ton of work to be caregivers and hide the shit storm that is our lives. 

It takes a ton of work to learn how to Love you life in spite of caregiving but I know you have the capacity to do that. 

And if you’d like to share your stories of feeling small or unseen find me at love your caregiving life.com or simply reply back to the newsletter you get every Thursday.

Thank you for listening.