Multiply Chronic Illness by the Power of Two

If you don’t get the title reference, it comes from one of my favorite Indigo Girls’ songs containing the line “Multiply life by the power of two,” which refers to how life alters when you are part of a couple.

When I launched this blog, I promised myself and my readers to be brutally honest about my feelings. An entry has been within me for quite some time that I have avoided writing because it would be emotionally painful. I recently realized that what I find so hard to say might be the most worth saying, so I am forcing myself to do this.

This entry is all about chronic illness, trust, and relationships. For quite a few years, I haven’t dated let alone paired up with somebody. 2009 seems to be The Year of Crushes and has brought a lot of issues to the surface. Living with a chronic illness is one thing, but contemplating somebody else sharing it with me is another thing entirely.

First, let me make something clear: I am scared in every fiber of my being that the health I have attained will vanish into thin air. Who knows why everything came together to cause a shift toward energy, so who knows what will cause a change in the other direction. One false move on my part might just shatter everything I’ve built over the past 3 years. Gone in a puff of smoke. With an unknown return date. AT my sickest, I never planned for things to get better just dealt with the reality before me. Now I try to do the same, but I was much more successful at avoiding hope than I have been at squelching fear. I’m faking acceptance right now wishing for it to become how I feel.

All these crushes have spurred me to contemplate what happens when you toss an unsuspecting person into the mix. Even after eighteen years with this illness, I am still struggling, so what is going to happen to the uninitiated? I don’t have and wouldn’t want the kind of heart that simply shuns romantic attraction to avoid the complications of another sharing my life and therefore my situation. This means I have to consider many other things that engender fear.

A large part of the terror comes from somebody finding out what my life is really like. People typically meet me when I’m out being active, but that is only a fraction of how I spend my time. For the most part, I keep myself entertained with books, television, craft projects, the never-ending task of feeding myself, and thinking. None of this is particularly interesting or worthy of comment. On a bad day where I spend most of the day on the couch there is even less done. On a regular basis , my body is doing something ridiculous such as hurting in a new way, getting infected in a random part, or deciding it hates what I have been feeding it with gastro-intestinal distress as its means of expression. So, not only do I have nothing interesting happening for long periods of time but the events of note quite frequently aren’t topics for casual conversation.

I never know how to answer the routine question, “How are you?” The more complicated “What have you been up do?” is even worse. I never know who wants honesty and if they can understand the truth from the perspective of my reality. My answer to either question might be something like, “Well, I feel like a truck ran over me. The good news is that it didn’t back up and try it again. I’ve read a trashy novel, managed to eat, and took a nap.” That might be fine to tell somebody once in a while, but as a regular response it quickly gets old to say let alone hear. I become a boring, dull person who is seemingly always whining.

By their nature, romantic prospects become more entangled in your life because of the time spent together, activities shared, and waking up in the same bed. What can be glossed over with a “Today has been a bit challenging” cannot be concealed if they were present when you tried to get out of bed and didn’t quite make it.

My chronic illness also effects my mood. It is hard to stay positive when it hurts to open a jar of applesauce that you really need to eat because it is all you can swallow at the moment. I get upset, frustrated, discouraged, and generally pissed off. I am not always perky, playful, clever me. I can be the woman crying on her kitchen floor because she can’t figure out where she put the lid to the ketchup. In addition, one of the fun traits of this illness is depression as a symptom not just a reasonable emotional state based on circumstances. So, at times my mood is horrible no matter what I or anyone else says or does.

While creative management of circumstances can hide a lot, is that such a good idea? Somebody who wants to become a part of my life really needs to know what that entails. However, the reality is frightening to the uninitiated. I find myself simultaneously wanting to describe the worst possible circumstances in brutal detail and hide everything with a smile and clever turn of phrase. Even in this entry I find myself giving examples and descriptions that paint a grimmer picture than what I am currently experiencing. I don’t want anyone, myself included, to forget how bad it can become. At the same time I am attempting to be upbeat and clever in the way I express my concerns and feelings.

My last long-term relationship partly imploded because of my chronic illness’s out of control downward spiral. While it was not one of the top three causes, it played a role. As previously mentioned, I live in fear that the health I have gained will disappear. I am not certain I can handle it happening. How on earth can I know if a significant other can take it? There is no real way to know until it actually occurs meaning a relationship might fall to pieces right after my health falls to pieces. That possibility… Sheer terror.

Though my chronic illness has taught me much, I cannot be certain I would wish it upon myself in hindsight. I do know I would vote for it vanishing into thin air if I could plan my own future. How can I ask somebody to jump into a mess I’d gladly rid myself of at the first chance? Who would sign up for any of this? I know I’m pretty damned amazing, but probably not that uniquely spectacular.

To be honest, I know a person worthy of my affection will by their nature find it hard to watch me cope with my illness. I have given a lot of thought to what it might be like to be in their shoes. First, there must be a lot of frustration and feeling powerless. All the person can sometimes do is see me struggle, hear me cry, or watch as my perky self is replaced by something else. There are times when I have no fight left. Watching me become that person must be painful to say the least.

Then there are pragmatic considerations. Limited energy means I can’t always do things. Sometimes I have to back out at the last minute. Sometimes I need somebody to take care of me. Sometimes I need somebody to know to take care of me even if I don’t ask. And, sometimes I need somebody to be strong and reassuring so I can be weak and scared. Not only will a significant other be present more than friends, but they will be closer to me emotionally. It will be both harder on them and more likely to fall upon them to help in a multitude of ways.

With all this on my mind, it makes sense that I become paralyzed by fear. If I show them the reality, they might get scared off. If I gloss over things, they will stay for the moment but potentially leave when the situation becomes apparent. Even if they can take my current circumstances, who is to say they can take it should my health move in a different direction. Will anybody see the great things I bring to a relationship along with the negatives? Am I certain I should even let somebody I care for take on my life?

For now, I try to be truthful with new people which I find to be challenging. My fears get in the way of words coming out of my mouth. I find myself testing people by giving them a small dose of my reality and watching their reaction. I know this is disingenuous and try to stop myself, but am not always successful.

I thought working on becoming healthier is the hardest thing I have ever attempted. Navigating these waters of chronic illness, trust, and potential romantic relationships is turning out to be just as hard in a different way. In all of this, I know with certainty I must keep moving forward even if I am scared beyond reason and can’t see the place where hard ends. I want a companion besides this constant fear with whom I can build a life.

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About Jen

After acquiring a degree from Vassar College in psychology, I moved to Western Mass where I ran a peer mentoring network for disabled college students as well as activism and organizing around disability issues. I also conducted research on disabled women’s body image. An Upstate New York native, I eventually followed my heliotropic nature to the sun of Southern California. I divide my time between writing (disability fiction and essays) along with moderating San Diego Bisexual Forum which is one of the oldest groups of its kind in the country. In my off hours I can often be found in my neighborhood live music venue enjoying our local talent.

2 thoughts on “Multiply Chronic Illness by the Power of Two

  1. OK, so this may or may not be a helpful comment, but here goes. What strikes me about this is that almost all of the difficulties you describe are different (if they are different at all) only in degree – not in kind – from the difficulties faced by anyone trying to be in an intimate relationship with someone else.

    So this means that you need to find someone especially strong and patient and kind. But do you know what? *Everybody* should be loved by someone like that. What this means, in effect, is that you don’t have the luxury of dating assholes and fooling yourself about it, to the extent that most of us do. I’m not saying your position is not challenging and scary – of course it is – but you also possess a certain built-in protection against many of the sort of people whom…you wouldn’t want to date anyway.

    I think your truth and honesty policy is the right one, and that you shouldn’t feel guilty about dropping bits of truth to find out a bit more who people really are. That’s not only fair play, it’s necessary. Rock on. Just my opinion.

  2. I think the key piece in what you said is the idea of degree. I have more to figure out how to handle in an intimate relationship and a potential partner would have more to cope with as well. It’s like a faucet that drips (most people’s relationship issues) and a faucet on full blast that you can’t turn off (my relationships). I do feel like I am asking someone to take on a lot. Am I worth it? Yes. Am I terrified a potential partner won’t realize that? Definitely. I’m afraid the complications are too obscuring.
    I do agree I have great built-in jerk repellent. It’s always been a huge plus of being me.

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