The Lessons I've Learned While Being My Wife's Caregiver
In the beginning, when you meet someone you only see what they give you. They give you what they give everyone else: A smiling, laughing, active person with lots of dreams and goals. They don’t tell you right away that they’re in pain. They don’t tell you that they’re living with an invisible illness.
Eventually, they let you in. Somewhere on the first date or two, maybe before you even get to sit down to a meal, they’re trying to explain symptoms and complications to you. It’s not a test for you but rather a courtesy. They’re giving you an out so you can walk away before you get in too deep. Even if you already know the clinical definition of Crohn’s, you don’t know Crohn’s. And we look at them on good days, and we think we can handle it. They seem fine, this is a breeze.
Every relationship has a honeymoon phase, usually lasting six months to a year. When your partner has an invisible illness, it’s often shorter than other couples’.
Within the first two weeks of dating, we had our first ER visit. Everyone stood around nonchalantly after a barrage of tests, medicines, and IVs, declaring she needed a rectal exam. If it had been me, I would have freaked out, begged, maybe even try to bargain my way out of it. She didn’t. Rosella just rolled over like it was nothing. It was my first lesson for the evening: Oh, she’s done this before, she must be so used to it. She responded like they had asked her if she had wanted a drink of water.
Rosella didn’t say a word about me being there, didn’t yell for me to get out of the room or cover my eyes. Normally, people would be embarrassed or uncomfortable. I mean I was still technically a stranger. It was my second lesson of the evening: She is so used to being stared at by strangers that it doesn’t seem to bother her anymore.
My third lesson from that night was this: She has this ever-flowing need to constantly apologize for existing. She apologized for having to be there, that I had to see her like that. She would constantly say “I’m so sorry” like her illness, her existence, was a burden. I just spent the last few minutes cringing, watching her get a rectal exam. I reflexively went to cover my eyes but stopped. I was in shock. I was waiting for someone to step up, and hold her hand. But no one did. And she seemed so indifferent.
There was no expectation of comfort. No gold stars. No ribbons. She just peeled herself off the table when it was over.
I believe after that hospital visit was the first time I heard her verbalize that the doctors thought her sickness was all in her head. I remember thinking, “Why wouldn’t they believe? It’s on her medical record?” But you don’t say that in the ER, you just comfort. I held her, and pet her head while she apologized over and over for inconveniencing me. She offered to pay for my cab home, but I refused. She never knew that I went home and sat in the quiet, and thought about everything.
You see, I’m in healthcare, and I’m naturally a fixer. All I wanted to do was fix her. I had never run up against a problem I couldn’t fix – I could fix her. I could make her better.
I don’t care who you are – if you have a partner with an invisible illness, you are naive. Your naive because you think you can fix them. Whether you’re naive because of love, personal gain, arrogance, it doesn’t really matter. They have an illness, they aren’t broken.
I gave her a choice. “I’ll take care of you”, I said “I’ll let you rest. Take time off school, quit your job and I’ll take care of you.” What I didn’t anticipate was that I was signing on to take care of everything, in all capacities. And the reality of just how difficult that is smacked me in the face real quick.
Shortly after, Rosella got so sick with an antibiotic-resistant kidney infection she could hardly walk. She was battling fibromyalgia, unbeknownst to either of us. I realize that now, looking back, that she was in a Crohn’s and fibromyalgia flare for months.
I’ve learned the most about Rosella by observing. I saw that things that are often thought of as simplistic and mundane were overwhelmingly difficult. Taking showers together as a couple is usually sweet, but it was a practical solution for us. Just washing her hair was monumental. I’ve watched her face while she would go through the steps, and count the spoons to herself, and I’ve thought, “How does she get out of bed?” But she does.
I’ve watched Rosella be in so much pain, that the simple act of drinking from a cup was too exhausting. The motion of moving the cup was too painful. Her fatigue so bad she could hardly swallow.
I started out like most people, empathetic, sympathetic, loving, caring, but she knew I would get tired. I didn’t really understand what that meant. What she didn’t want to have happen, was that I would get so exhausted taking care of her, I would resent her. And somewhere along the way, I did. I got so caught up in myself, and so tired. I did. I was angry, I couldn’t fix it and I was heartbroken because I felt stupid and because I realized it really was forever. So now it was just going to be a game of manage the symptoms and I thought, “Now how the hell are we supposed to do that? We can’t even do that now.”
Stop complaining. You’re complaining because you’re tired, and I get it. But I guarantee if your partner could just jump up and make you dinner, or do anything at all, they would. They don’t want to feel like a burden, and nine times out of 10 they do.
In the instance when your mind messes with you and you’re second guessing whether they’re sincere or not, there are two roads to take, and whichever you choose tells exactly what kind of partner you are. Trust your partner. It’s hard to talk about illness and they’re being vulnerable with you when they tell you symptoms.If you doubt them, the trust will be gone, and they’ll never let you back in.
When you get into a partnership it’s not about yourself. You go from being I to being an us: We’re a team, we communicate and we thrive because of that communication.
As partners, spouses, and caretakers – it’s OK to get tired, it’s OK to get angry. We’re human beings and we feel. But despite all of that, I never loved her any less. I learned something about myself. Even in the face of anger, and resentment and struggle that despite all of the things this person goes through, that we were made for each other. She is such a profound part of my life, and I couldn’t live without her, so I make the conscious decision to stay and be her partner – and to face this disease head-on with her each and every day.
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Gettyimage by: teksomolika