Love and Illness: Allowing Caregiving

Peony Flowered Tulip

Chronic illness adds a different level of vulnerability to an intimate relationship. I have now experienced dating both as a healthy person and as a chronically ill one--granted these experiences are seventeen years apart. Chronic illness forces us to be vulnerable with our partner much more quickly, in much more intimate ways than we might otherwise reveal so early on in a relationship if we are healthy. 

For me, the combination of chronic illness and a sexual assault often left me feeling unlovable, unworthy or like I would be a burden to a partner. As I have discussed before, my illness is the major reason I shut down my hopes of finding love for so long.

Peony Flowered Tulip

I have decided to continue to blog about Love and Illness because I think it matters. Because I think there are others with the same feelings, the same doubts, the same challenges. Because I think being authentic about what falling in love means for me with a chronic illness is an important part of my story that I continue to share here.

'Sensual Touch Tulips'

Kiernan is a natural giver, a natural nurturer, a very intuitive and observant man who knows just by a quick look in my eyes how I am feeling. Who he is as a man has helped me to allow myself to be vulnerable and allow myself to be taken care of in the ways that I need. 

Over Memorial Day weekend, I stayed two nights at his house, where I relied completely on him to take care of me. This was a HUGE step for me. 

A little note here: I know I have friends on every part of the spectrum in terms of what they feel is 'appropriate' in terms of spending nights together, premarital sex, and everything in between. All, I can say is this: please don't judge our choices. We are two adults and we've waited a long time for love like this.

For two weeks previous to this stay I found myself down for the count with an awful respiratory bug and then a sinus infection. I missed K like crazy. I let him come over to visit and eat chicken soup with me, while I sat there in my pajamas, hair uncombed, teeth unbrushed, no make-up on, clammy and sweaty, pale and miserable. Even my closest girlfriends know that I haven't even let them into this world. 

And what did Kiernan say: "You're still beautiful."

Letting him see me this sick was a big big step that helped prepare me for our weekend together.

No one other than my Mom has ever fully cared for me. Granted I'm healthier now, but I still need to have my meals prepared, to have help with getting and carrying things, to be driven wherever I need to go, to be pushed in the Rolls to go for walks, to have someone get me something if I forget to bring it upstairs. I still only do my activities of daily living (ADLs) and not my instrumental activities of daily living (IDLs) (cleaning, cooking, grocery shopping, laundry, etc.).

Tulips at the Arboretum

It helps that Kiernan has a great sense of humor. When I showed up with a large suitcase to get me through two nights at his house, he just asked me what my flight number was so he could make sure my suitcase made it on the flight. 

He turns whatever I'm embarrassed about into loving humor and also acceptance. "I know you need all of these things, baby. It's okay," he says.

For our weekend, I did not have to worry about anything. I asked for what I needed--a chair to sit on at the bathroom sink, a big container of water by the bed, help getting things I had forgotten upstairs because I couldn't do another flight.  

Kiernan planned, cooked, and cleaned up all of the meals. He has printed a list of FODMAPS friendly foods, hung it on his fridge and tailors meals to my diet. 

Food is a BIG issue for me. I eat local, organic, clean foods. So does K. I also have a lot of dietary restrictions to pay attention to. Mom has always done all of the menu planning, shopping, cooking and cleaning up. I always know that my needs will be met. 

If I'm completely honest, one of my greatest fears has been finding someone who could provide for me in terms of healthy and yummy food. It's terribly scary not to be able to provide this basic need for myself. Yes, there are ways to simplify, but I can't even do that. And I find that I have to eat 'clean' to maintain the quality of life I do.

Kiernan planned out all of the meals and I didn't have to think about it. At all. That's remarkable for so early in a relationship. He's cooked for me several times now. 

After lunch on Saturday afternoon, I found that I wasn't feeling very well. I tried to push through it, but I couldn't. Kiernan suggested we head upstairs for a nap. We both fell asleep for a short while, he woke up and knew that I was not feeling well enough to get up. He quietly got up, asked me if I needed anything, asked if I wanted the white noise machine on, asked if I needed him to wake me up at a certain time, and left me for the afternoon.

I slept four hours. 

Even at home, it's hard for me to accept that I need to rest. I push through the fatigue because I feel 'guilty' that I'm 'lazy'. (Yeah, I need to work on the self-talk.)

At 6:30 K came upstairs, quietly came into the bedroom and woke me up. He hugged and kissed me, asked how I was feeling, and when I apologized for sleeping the afternoon away, he gently said: "You were tired. You don't feel good. You needed the rest." 

It's hard to express, even as the tears well in my eyes, how much this type of acceptance and understanding matters. How much it makes me feel safe enough to not feel good. To rest when I need to. To know that Kiernan doesn't resent that I need the rest. 

I tend to be the one who carries expectations of what I want, and am disappointed when things don't pan out. Kiernan is more able to say: "Hey, it's okay. Let's just rest." He's the calming presence to my anxious one.

Was I anxious about letting Kiernan take care of me all weekend? Was I worried that he'd see how much 'work' I am and run away? Was I still a little uncomfortable that I need so much help? Is it hard to be chronically ill and in a relationship? Yes. Yes. Yes. And Yes. 

I don't want to wear this man out. I don't want my illness to be the deal breaker. I don't want his health to suffer because of me. I know being a caregiver is hard, and there's a part of me that still wants to protect him from that role. 

But I can't. It's part of the package. And chronic illness does and will affect every aspect of a relationship from what types of dates you can go on to how much you can plan to how much help you need to your physical intimacy. There's no hiding chronic illness from a partner. The carefree dating that comes with being healthy doesn't exist.

What I can say is this: with the right partner, dating and falling in love with chronic illness are possible. 

It requires that I allow myself to be vulnerable in ways that are very scary to me. It requires that I allow myself to be dependent on someone for some very basic needs. It requires that I accept Kiernan's offers and willingness to help. It requires that I believe him when he tells me I am not a burden, that he is 'in this'. 

What makes Kiernan such a good caregiver is that he shows constant grace. He doesn't keep score. He shows acceptance, love, compassion, and empathy. He doesn't pout or act disappointed when my health interferes with what we might have hoped to be able to do. He also takes initiative to anticipate my needs before they arise--like planning meals; asking what I need so I don't always have to ask;  reading the signs that I don't feel well and encouraging me to rest; gently turning on the sound machine closing the door and letting me sleep the morning away while he does chores.

Falling in love with someone is already a beautiful but terrifying experience. It's a risk we take, healthy or sick. It's a little bit harder (maybe a lot) when we are sick, but from my perspective taking a chance on love has been nothing but worth it. 

Do Kiernan and I know what the future holds for us? No. We do know for sure that what we have now feels right and it's where we want to be right now. We hope this relationship continues for a long long time.

This man has changed me so deeply. I never thought a man would be able to take care of me in the ways that Kiernan does. He amazes me.

I'm so excited (and a little nervous) about our first trip out of town together this weekend. We'll be going 'off the grid' and heading to a small town in PA for a weekend of being in nature and eating good food and just being together. The fact that I feel safe and secure enough to go on this trip says a lot about how I have grown, who Kiernan is, and how we negotiate this crazy thing called chronic illness in a relationship.

Blessings,

Emily