A few months ago, Will, my husband, opened up about his life living with health challenges. Chronic illness if you want to put a label on it. And since then I’ve had it suggested to me that I should share my half of the story as the spouse, partner, in the situation. What I go through, feel, struggle with, because my side of the story deserves to be heard as well, I was told. I’d always backed away from the idea, mostly because I felt it was Will’s story to tell, his struggles, and that having me share about my own struggles with these challenges he didn’t ask for would only add stress and anxiety and questions and hurt and pain to an already sensitive part of our lives.
But later this month I’ll be sharing about some of my own personal struggles on the #makeitREIGN Campaign blog, and I thought before I put the cart before the horse and share about the outcome of what I went through last year (after reaching emotional burnout) and the growth I- we- have experienced, I should first share about some of the struggles I live with as the emotional caretaker to a man who is fighting a battle he didn’t ask for. Not because I am looking for sympathy or anything like that. But because I want to be open and honest about something very real in our lives that we live with every day. It isn’t pretty, it isn’t fair, and it has forced Will and I to face things as individuals and as a couple that can either break or strengthen you. Somedays both.
My hope is that by sharing what is written below that others in my position won’t feel guilty- as I have- or struggle with their emotions as much on the tough days when the person they love most in the world is also the biggest source of stress as well. It’s a cruel parallel to draw, but it’s a real one and for anyone else out there loves someone who lives with these challenges, you know that you carry them too, but in a different way, as someone both on the outside and inside of the situation- sort of a cruel limbo. By adding my story to the conversation I know I am sharing a very real, raw part of myself; I could face scrutiny and judgement, but if one person or couple can relate and feel a connection with what I have to say, if it helps another couple stay strong knowing they are not alone, then it will all be worth it. And as one last thing before I begin, I had Will read this before I shared it. Out of respect to him and all that he goes through I would never share this if he wasn’t all right with it, and he encouraged me to do so: ‘Kat, this is you on paper’. Those who struggle with health challenges- any challenges- deserve to be heard, but those who love them and live with them do as well, because we’re walking right alongside them. We take on a lot of their struggles while adding our own unique ones to the mix, often with a muddy combination of emotions to accompany an already delicate life situation: affection, sympathy, helplessness, frustration, anger, exhaustion- and more. If you prefer to not to read what is a very uncensored and honest account of what this can look like, feel like, now is the time to stop reading. But I hope you won’t. Here goes…
I’m sitting here trying to figure out what to say, where to start. And the more I sit here and think about what it is I want to say, the more I realize I should just try to talk about how it feels.
How what feels? I guess that could be a good place to start. The what I’m referring to is the life of a family that lives with chronic illness in it’s midst. Like an uninvited guest at dinner who welcomes themselves in or a third party in a relationship meant for two people, illness- or insert what applies to you and your life situation- is another character in the script of life. A character that I want to erase, tear out the pages with them on- burn them even. But doing so is impossible. At least it is for me, because it would mean removing something much bigger, much greater, something- someone– I love from this existence. And that I think is a great place to start when it comes to talking about how this life feels. The life of someone who lives in the presence of chronic illness, who loves someone who lives with it themselves, a fate they didn’t choose but are faced with.
Our family has shared about this aspect of our life openly, not because it was easy and comfortable, but because there is a collective voice getting louder on topics previously labelled as ‘taboo’ and stigmatized and we want to help raise that volume from a whisper to a scream. To help destigmatize and break down the real- life barriers of challenges that more people struggle with than we previously realized. The topics we used to shy away from, deny because of our fears, of how we may be treated or viewed- and yes I say ‘we’ to include those who love, support, and live with someone who deals with chronic issues because it affects them too- we are shying away from the tough conversations less and less. But within these efforts are the voices of the people propelling them forward, and the daily challenges they live with are very real, and that is where I wanted to add my voice to the conversation.
I have previously shied away from telling my half of the story. My husband is the one living with the chronic health issues and he is the one who deserves to be heard, understood, respected. He is the one who faces each day with a strength and grace that elevates him above his challenges that go beyond the scope of what any person should ever have to cope with. The moment he wakes in the morning he is forced to face these demons, to fight against them to participate in ‘normal’ life- to work and support the family he loves, the family he would do anything for. He silently fights every. Single. Day. With an invisible foe that I have come to hate. An element within him- indeed a part of him- the man I love, that I want to strike from the record. Remove from my life, walk away from. But I can’t because to do so would be to lose him. To walk away from him. Yes, the pain, the other health issues. The frustrations and patience- draining moments that I would expel from our marriage in a heartbeat if given the chance. But not him. A life without him, without these uninvited challenges, infuriating ‘why us’ situations, could be a lot simpler. And some might even argue happier. But it would be a fraction of the life that I live now. Of the other side of the coin: the joys, memories, hopes for the future of a life we hope to continue to build together. That too, would also be gone. Erased with the bad would also be all the good. That is the emotional battle I face. And the man I met, fell in love with, married, created life with- he is good.
And let me say how underwhelming a word like ‘good’ is to describe him. Oh yes, he drives me crazy, we fight, we hurt each other’s feelings. We make a great big mess out of things plenty of the time. But it’s our mess. A mess I love above all else, a mess I fight for. And it is good because of him, because of us.
Now if I haven’t convinced you enough that I am whole- heartedly in love with this man and the challenges he didn’t ask for, I’m not sure how else I could prove it here. But I hope I’ve made enough of an argument to demonstrate my love for this man that the next few sentences won’t seem so heartless. Because I know that reading them, without any sense of my person, my voice, and connotation will also remove much of the humanity behind them. So forgive me, they may appear much colder on a screen, removed from the person who has felt them, lived them. But I am sharing them in the hopes that others in my position, those who love someone who struggles, faces challenges, and fights daily through a personal battle, also feel heard and recognized. Because we are not the heroes, but we fight the same battles alongside the person we love, often suffering with our own struggles and challenges, but putting them aside to draw out the greater good for our partner. To fight alongside them and celebrate their victories. Some may see it, acknowledge it, but it’s the little gestures, acts of love, and selflessness, where we give of ourselves when we have nothing left- this is where we choose to partake in the battle- a battle we could simply get up and walk away from. But don’t.
There are days I feel heavy. Exhausted. Utterly burdened with the ‘for better or worse’ vows I took on our wedding day. I just want to walk away, quit and say f*ck it all. F*ck you and your problems. They’re yours, not mine and I can walk away. Buy a one- way ticket and step over those miserable uninvited challenges as I walk out and slam the door behind me. Aaaaaah how cleansing and satisfying it would be to shed that weight from my life. On the life that we built. In these moments the darkest thoughts and emotions are drawn out from me and I want to re- write this life script- or better yet toss the whole damn thing out the window- and start over. A clean start would feel so refreshing wouldn’t it? Wouldn’t it? But would it? And then the guilt sets in. That horrible, stomach- in- your- throat feeling of ‘I’m such an awful person for thinking that’. He didn’t ask for this either but the difference is he can’t walk away from it. And just like that I spiral down into this bottomless pit of emotional ping pong: ‘you’re such a bitch’ followed by ‘but I’m so tired and don’t know if I can do this anymore’ followed by ‘he doesn’t deserve this’ followed by ‘but neither do I’… and it goes on and on until I’ve mentally tortured myself to the point of exhaustion and hating both of us: him for having these challenges and me for hating him for something he has no control over and having these cruel- beyond- words feelings.
That is the best way I can describe what living in the presence of chronic health challenges can be like. It can suck the joy and energy out of life in a slow- leak- you- can- never- find kind of way. It can feel like utter torture. Day- to- day things that others take for granted or don’t even think about can feel like momentous achievements. But there it is. There it is: you also learn to celebrate the little things. To find joy in the little things. And in a way- in a weird, contorted way of reaching optimism- isn’t that a gift of life: to enjoy it and appreciate it? When I say it can feel like a convoluted emotional roller coaster, you can see what I mean, right? How in the same breath we can be at breaking point and also then twist it around to try and find the positive?
I’d say that describes how we go about life: facing these challenges everyday but ultimately trying to look at the positive. We joke about making lemonade (you know the phrase when life hands you lemons…) and adding vodka on the hard days. We’ve learned to laugh and take turns bolstering the other- a growth in our relationship I’m really proud of. And our communication too; we’ve worked hard, fought hard, for what we have. I am by no means the collective voice for the partners who have loved ones living with chronic illness, health challenges, etc. But I am one more voice trying to share an honest and candid account in the hopes that others will feel less afraid to address how they feel, to open up and talk about it, to know they are not alone, and that their own struggles are real and valid, and ok. If one more person can feel less alone, if one more relationship can sustain these challenges because I opened myself up here honestly, then I regret no part of what I’ve written here. This took me a long time to work up the courage and emotional strength to write, not because I don’t think I should be allowed to feel frustrated, or challenged, or exhausted, or any other myriad of emotions, but because above all else, my heart hurts for the man I love and beyond fear of judgement or scrutiny, I don’t want him to hurt because I have shared what I have here.
So to him and to those reading this, know this: above all else, he is my world. I wish I could take his challenges away, to see him released of these burdens, to live how he deserves to. But I can’t. And that feeling is the cruelest, most frustrating emotion I battle with, why I ultimately lash out and make a mess of things, hurt him, crumble some days. The hardest pain we face is watching those we love suffer and that is my part of the battle. We fight it together, two imperfect people who just want to live a life they love and have built together. And that right there is the sentiment I want to end this with. The feeling I hope translates from the screen to you as you read this raw diary entry by a woman who loves with her whole heart a man she cannot help the way she wishes she could. But there is love. SO much love: unconditional, messy, imperfect love.
Photo credit: Ally Fotografy