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To the Able-Bodied Lovers of People With Chronic Illnesses

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I’ve been unmarried to my “husfriend” for three years. I have Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, irritable bowel syndrome, gastroesophageal reflux disease, polycystic ovarian syndrome, gastroparesis, asthma and psoriasis among some other issues.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I met Jared in 2012, and my God, what possessed the man to pursue anything? Within a week of beginning to date, I had honestly told him, “I want kids, but may never be able to have them, and occasionally use mobility aids because my body is crap.”

Many men run. If you’ve made it this far, you’re doing well. Being his first everything, guilt set in — my fellow spoonies know that guilt. To our able-bodied lovers: That guilt will never go away, this niggling voice that says you deserve more. Please reassure us.

I ran, breaking his heart, for several months. Upon reconnecting, timing is everything, even the absolute worst. I was working at a gas station and lost the feeling in my legs. The only feeling was a burning numbness. I informed Jared that if we were together, it was forever… and we discussed everything. Upon getting to the eventual disability application process (which takes years), he held me close and said we would be OK, no matter what, for the rest of our lives. If you’ve gotten this far, you believe in your partner. If you can’t do that, leave.

Now for the nitty-gritty nobody likes to think about.

I think you need to reevaluate what your definition of commitment is. Marriage isn’t practical for us. Insurance is everything. His insurance would skyrocket if we married, and isn’t nearly as good as the insurance I already have. Does it invalidate our devotion to each other? Not in the slightest. Was that always easy to comprehend? No.

There are a billion appointments. Literally, a billion. Your spoonie is likely on a first-name basis with the staff at their primary care provider, and physical therapy in my case. Our full-time job is maintaining our crappy health.

If I could have Jared understand one thing, above all others, it is that my 100 percent is not the same as your 100 percent. He comes home from work and asks what I did. Today I vacuumed, did dishes and showered, before grocery shopping. He worked eight hours changing cable lines, then came home and took me grocery shopping. It breaks my heart when I try so hard, and he negates it because he does more. I think it’s the biggest obstacle we have.

I can’t speak for all spoonies, but here’s a small list that may summarize.

1. We may hate you at times, and we may resent ourselves for what we put you through.

2. Believe in us, regardless of anything else.

3. We may have to significantly alter life goals because of our illnesses. It hurts us, too.

4. We have more appointments than the Pope.

5. Our best won’t feel like your best. Please understand that. Consequently, our milestones are big for us. Please be happy for us.

Lastly, our capacity to love shouldn’t be diminished by what we can’t do. I know it’s one of the few things I do extremely well.

Originally published: April 14, 2016
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