I’m pretty sure if you asked any one in a long term relationship they would say that relationships are hard work. You have to wake up every day and make a conscious decision to keep trying. Trying to understand. Trying to do your part. Trying to focus on positives rather than negatives. Every person who continues in a relationship has to try pretty dang hard. Now, add to the mix one person who typically feels like they’ve just been used as a soccer ball in the World Cup games, and you have a little extra to overcome. Of course, I can’t speak for the entire chronic illness community. It’s possible that everyone else dealing with this just smiles and constantly focuses on their blessings, but I know for a fact that a relationship with me isn’t always easy. And here’s why . . .
1. I’m a diva.
I wasn’t always a diva. I could go with the flow. Then, I got sick . . . See, here’s the thing. It’s not that I always want to get my way; my body just seems to demand it now. I don’t just get “a little warm” any more. My heart races; I break out in hives; I faint, . . . you get the idea. With chronic illness you’re always trying to strike the perfect balance between appearing somewhat agreeable/ normal and not putting yourself in a situation that will take take days or weeks to recover. This means my poor husband deals with a lot of, “I’m hot. I’m cold. I’m hungry. I can’t eat GLUTEN! That has too much sugar. I don’t use aspartame!” type complaints. I know, beyond a shadow of a doubt, that I’m being difficult, but I also know that being in bed for days or chillin’ in the ER isn’t going to be great either.
2. My life is pretty boring.
I used to tell stories of work drama or funny things my students did after my husband and I came in from work. Now . . . I tell him about doctors appointments, or what I saw on Netflix, someone’s funny blog post, etc. It’s not exactly exciting. And . . . since Joe is the only human contact I typically have during the day, I’m essentially attacking him with my need for human interaction when he walks through the door. (I’m pretty sure he must drive around the neighborhood for an hour trying to muster the patience to handle my chatter when he comes in the door. It was for this reason that Zoey, my 9 year old shih Tzu that was living with my parents, came to live with us. She’s not the best conversationalist, but she’s a great fluffy listener.
3. My spouse doesn’t “get it.”
In his defense, I couldn’t possibly understand this either if I hadn’t dealt with it. He’s been known to say things like, “I looked your illness up on the internet, and it says you won’t die.” Um, yeah, you’re right, but since I am 29 years old I would love to feel like living, please! I am super pumped that he doesn’t want me to die (I’m assuming that means he likes me!?!?), but because males and females have totally different grasps of communication I interpreted his statement as total insensitivity. It wasn’t intended that way, and there have been and will be many more situations like this, because that’s just how life goes. The important thing for both of us is knowing that the other person is trying to understand where we’re coming from.
4. Spontaneity is dead.
There was a time (when we were dating or for the first 7-8 days of our marriage) when we had an idea and just decided to do it. Seriously, once we decided to drive 3 hours to Matewan, WV (Google it. It’s fascinating.) because we wanted to see the site of the Matewan Massacre and visit the museum (which I’m pretty sure was located in a trailer- Joe says it was a railroad caboose). Now when we decide we want to do something. We ponder whether I am physically capable of doing it. Will I have enough to time rest before/after? Will there be food I can eat? Will it require much walking? If so, should we take the wheelchair (It’s name is Snooki*, by the way)? Could I possibly see people at this event that I don’t want to see me in a wheelchair? Do I have enough meds? Is there a decent hospital nearby? You get the picture. We have been trying to work out a trip to the Louisville Zoo for over two years. I’m giving up hope that it’s happening.
* Snooki the Wheelchair will be discussed in a later post. It seems that wherever she goes, absurdity occurs.
5. I’m needy.
It’s true. I am. You see, there was a point when I was teacher who had completed her Masters and was halfway through her Rank 1. There was a time when I could use the tanning bed and wear high heels. There was a time when I didn’t worry about forgetting words or the steps necessary to complete a task. But now, those things are very real concerns. I’m hyper-aware of my faults, and I tend to interpret anything negative that happens as a reflection of the “sick me.” Joe didn’t pay attention when I was talking to him tonight? Clearly, he doesn’t love me because I’m sick. (Obviously, this isn’t the case, but everything goes through the filter of my inadequacies.) So, I require constant validation. Did I sound dumb? Do I look sick? Do you still think I’m pretty? It’s endless. Often, before we leave the house for anything that requires seeing other people, I’ll stand in the middle of the room (and sometimes stomp my foot to make sure Joe notices me) and wait for him to tell me if I look okay. (Or, you know, gush about how devastatingly gorgeous I am.)
Okay, there you are. I have shared some of the uglier sides of my personality with you, because I want you to know that sometimes chronic illness complicates things. BUT . . . just like in any relationship, we just keep trying. Every day I make the decision to do the best job I can at the things I can do- whether that’s listening to my husband tell about his day, trying to make dinner, helping him type for work, or just letting him know that I appreciate that he’s trying too.
*The plan (see point 4) is for Joe and I to go on a mini-vacation. So hopefully, you won’t hear from me until Saturday. If you hear from me sooner, I pooped out too early. 🙂
Love, peace, and health.