5 Ways Chronic Illness Makes Marriage/ Relationships More Difficult.

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.

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7 thoughts on “5 Ways Chronic Illness Makes Marriage/ Relationships More Difficult.

  1. Chris Wright

    Wow, Tiffany. I just discovered your blog. I have to tell you, I am moved and looking forward to following you. I know that not only will this blog be cathartic for you, it is relevant. I realized as I was reading just what you’ve written so far, that your daily experiences living with a chronic illness and the effect is has on the relationships in your life, is also significant to those of us who are full-time caregivers to someone with a chronic illness… who can’t express themselves. In many ways, you will also be their voice; because I’ve already come away with a possible new perspective on what my mother may be feeling inside, but can’t tell me. This was a wonderful reminder to not forget that just because she can’t tell me… doesn’t mean she isn’t feeling bad about herself, and to help her keep her pride intact. Thank you. 🙂 …looking forward to reading more.

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    1. Chris Wright

      it took me a long time to get this to post. i’m determined 😉 hope i’ve worked out the kinks and you see my reply. (for some reason it says “awaiting modification” I’m guessing that has to mean by you, since there’s nothing else for me to click)

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    2. tiffanyrearly Post author

      Thank you so much for sharing. I started this blog to be a release for me, but I truly hoped someone else could take something away from it. You have made my night!

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  2. Josh

    I found this post via a FB link and this is GREAT! One thing that you didn’t touch upon: for your SO, who is by default your primary caregiver, getting support for this particular situation is very difficult, if not impossible. Sure, there are caregiver support groups intended for folks who are taking care of elderly parents (or elderly spouses). But for younger couples (20’s, 30’s, 40’s), the concept of caregiving for a spouse is completely foreign, except for those of us who have to do it. I actually tried to start such a group in my city, but had exactly zero interest- despite all the younger folks I’ve seen in ICU’s around here. So I have a FB group going for the husbands of my wife’s friends (most of whom also have chronic illness), but participation in that group is nil.

    For some of us this is a bigger problem, because the problems we encounter are truly bizarre. For example, last year, my (35yo) wife suddenly developed a condition where she was forced to lay down in bed – whenever she would sit up above about 30 degrees, she would pass out. And then you have the doctors you have to deal with, most of whom don’t know nearly as much about your condition as you do. (In this instance, the local rinky-dink hospital we went to released her from the emergency room saying that she should “get over it soon”, but when we went to the big hospital in the big city, they found an intestinal blockage.) We’ve had to fight with doctors before who wanted to release her from the hospital too early because they don’t know any better. We’ve had to pull rank on doctors who will discontinue medication while in the hospital because the medication is “only a supplement”, when in reality it is a requirement (with dire consequences).

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    1. tiffanyrearly Post author

      First of all, thank you so much for reading. But also, thank you for serving as caregiver to your wife. So many people in the chronic illness community fail to get that type of support from their SO. I’m out of town (and on a blogging “think break”) for a few days, but I plan on interviewing my husband as we travel home. I typically “think” I understand his perspective, but there’s no way that I actually do. Please come back and visit the blog once his interview post is up. I’d love to know if your experience as spouse and caregiver is similar to his.

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  3. Shannon thompson

    This whole blog hits home. Im 31 with3 kids and chronic illness blew in suddenly 4 weeks after my 16 month old was born. Every day is a blessing and I look forward to continue to visit your blog!

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  4. Shannon.

    I just found your blog and I’m in tears as I read it. I’m a week away from being 34 years old & my chronic illness downward spiral started when I was 21. Every year is more changing than the one before. Thank you for sharing your story.

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