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What happens when your spouse is also your primary caregiver? Well, many things happen. The romance- yeah, say goodbye to that. Nothing romantic about having your spouse dress the bedsores on your ass just before bed. All that stuff you told each other you would do for one another when you grew old and wrinkley together? Not cute when you’re both in your 40’s. One of the other things that sucks about this arrangement is that your spouse always has ammo to throw at you that you can’t argue against. You haven’t cleaned the house properly in 15 years. You don’t do the everyday chores you used to do. You haven’t taken care of your kid(s) the way you used to. And my favorite that he just decided to bust out- he is truly alone because he made the decision to marry someone who was sick.

Can’t argue with that, but it still hurts like hell when he says it. You just don’t want to burden your family anymore. I have to say, I think about how I am going to off myself almost every day, and I wake up looking for reasons not to do it every single morning. Hearing these things, although usually said in anger, is certainly not good for the pros and cons list I have in my head at all times.

Funny thing is that I feel lucky to have someone to take care of me. Many of us don’t even have that. We get older, our parents die. Family doesn’t believe what they can’t see, like most all humans. Or they think we are drug addicts. Would they ever tell a person with cancer who is taking several different medications, many of them the strongest pain medications, that they are a drug addict? We can’t see cancer. I wonder if it’s just because we’re so familiar with cancer. I think about how many times I was misdiagnosed with Fibromyalgia for ten years because doctors were looking for an alternative to telling patients that the pain was only in their heads. It was a last resort dumping ground for undiagnosed pain. Now Fibromyalgia is recognized as a real disease and a diagnosis by symptoms can be confirmed by a simple blood test.

So, do we give our spouses or partners a pass more often than we would if we weren’t sick? You bet we do. Because we have to. All of my friends left. I don’t even remember the last time I had a friend stop by to see how I was doing. Different friends had different tolerance levels and different sized hour glasses before their sand finally ran out, but I don’t have anyone who stops to check on me, not even the “family”, and I use that term loosely, who live just down the road five minutes. I don’t know how they reconcile that, what they have to tell themselves so they can keep thinking they are good people or so they can sleep at night, but I know the truth. And my spouse definitely knows the truth.

When you are sick is when you need people the most, and it’s exactly when they leave, because things got hard or uncomfortable.
I suppose it’s just as well, because when you have a chronic illness, you can’t afford to have any extra negative energy around you. It will just add more cons to your list than is necessary.

All I can tell you is that our spouses/partners are in almost as difficult a position. There is no handbook. No one is prepared for an illness from which you will never recover in your lifetime. No one should have to be a primary caregiver for their 27 year old bride. So they may continue to spit that nasty venom at you occasionally, but give him/her a break. Maybe just remind them you want nothing more than to turn back the clock to before your illness when your life was fucking awesome. You may not have described it that way back then, but now? Yeah, now being able to walk to get the mail would be fucking awesome. Picking up the dog shit in the yard unassisted would be fucking awesome. Taking out the garbage by yourself- fucking awesome. It’s all about perspective, isn’t it?

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