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What I Wish People Understood About Polyamory and Disability

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Since my disabilities became more visible, more pronounced, I have noticed that according to many people in society, I’m not expected to have a relationship… and I’m definitely not supposed to have a non-traditional relationship.

I’m polyamorous. I fell in love with two people a long time ago. I didn’t know what to do about it, so I set them up with each other as it seemed like the easiest option. A few years later, with my disabilities worsening, my pain becoming more and more pronounced, and my independence falling off in little slivers every other month, they were there for me.

They were the only people to look at me the same way, starting from when I was 17, and even now at 29. They saw my pain at 17 and how it bothered me, but it didn’t change how they were with me. Even then, people got annoyed that I always had a headache. When I was hurting, other people would say “Again? Really?” but they didn’t.

They get me melon slices or some apple juice and do what they can to make me smile. When dealing with high levels of chronic pain, it’s amazing to find someone who helps you be able to smile, even laugh through it.

A few years ago, I was alone. My long list of problems, physical and mental, had come to a head. I was living alone, but I couldn’t make my own dinner, let alone look after a house, or myself. They dropped everything for me. Uprooted their lives and moved into a different country for me, from Wales to Nottingham, England. Incidentally, it turned out to be a good thing for one of them as he was able to get better health care.

It took us a while to find a house. They originally moved into a house one street over so they could be close all the time, willingly! I felt like I was a burden, but they showed me day after day that I have value. Even on my worst days they made me feel wanted and needed.

Finding and renting a house that accepts a person on disability benefits and someone who has a dog was hard, but we did it. Even now when I need help with clothes some days and can’t stand or even sit up, they still look at me the same way, and best of all, they understand. They don’t second-guess my pain, they believe me on a level that’s so difficult to explain because I have felt it so rarely.

I don’t meet many new people in the real world. When we do and they discover we are a throuple they are either interested, or they squint at my wheelchair and give a look of “Yeah, right.” The interested people I like, the others not so much.

Online people are less polite. They can say whatever they like because they aren’t doing it to my face. I’m just a person on the computer and an easy target because they think my relationship style is “wrong.” It’s “immoral” and “disgusting” before they discover I’m disabled; then it’s “impossible.”

I’ve had people tell me disabled people shouldn’t have relationships because they are effectively abusing their partner. They say I would be withholding things from them that they would expect in a “normal” relationship with a “normal” person. It generally boils down to an assumption that “Disabled people don’t have sex.”

I have a problem with this. For one, it implies the only important thing in a relationship is sex. There is much more to a relationship: trust, caring, honesty, closeness, happiness, even cuddling and snuggling in bed. Second, it insinuates disabled people are less, which we are not. I might not have the energy, the endurance of an able-bodied person, and some days my pain might be so bad all I can do is curl up, but that doesn’t mean I don’t like to be intimate with my partners. I love them and being close to them makes me feel better. Even if I wasn’t able to, I’m still not less; I’m still a person who is just as deserving of life as any able-bodied person.

I’ve noticed this really shows up in a polyamorous relationship. A lot of people have misconceptions when it comes to polyamory. We are a closed Triad, so there isn’t that much of a difference to a couple… we’re just a throuple. I’ve had people telling me I’m dragging them down, ruining their lives with my disability, using this innocent married couple to be my carers. A few go the other way, saying I’m being led on, I’m just an extra because they’re married and I’m being used. One person referred to me as a “token cripple.” I don’t know where this idea came from that if you’re disabled, you are supposed to never have a relationship.

I feel so amazingly lucky that I found not one, but two people who love me, not in spite of my disabilities, but for me. I don’t have to hide my pain; I don’t have to hide my depression.  They spend time researching my conditions of their own volition; they actually want to be able to talk to my doctors and help me get my treatments quicker. With “fibro fog,” when it comes to appointments, Anthony is my memory. In the past, even getting people to understand the basics of my conditions was about as fun as pulling teeth. I feel lucky that they actually want to know.

Recently I’ve had a recurrence of trigeminal neuralgia. It’s been about six or seven years since I last had full TN attacks. When I suddenly screamed in pain, clutching my face, they sprang into action to find ways to get the pain down to a tolerable level and make me comfortable. I didn’t need to ask for help, and I think that’s what it all comes down to.

I think at the most basic level, a relationship with any type of spoonie comes down to two very important things.

1) I don’t need to ask. This is important. Sometimes I will ask for specific help, but in general I don’t need to ask for things multiple times a day. Every time I ask them to do something for me, it makes me feel like a burden. That I’m this weight they have to bear. I know they don’t see me this way; it’s entirely in my head. When I don’t need to ask, I don’t get the constant feeling. They make me feel wanted and loved instead.

2) I’m believed. Being believed can lift you up, it can validate you, it can pull you out of the darkness of knowing you’re in pain but because people didn’t believe your pain you wondered if it was really that bad. Being accused of exaggerating and making up your pain can lead to constantly second-guessing yourself. Having a person just believe straight away is like they took this huge weight off of me and threw it away. I feel lighter; it gives me the strength to trust myself that yes, my pain is this bad, and no, I don’t deserve it.

A relationship is of course more than these two things, but as a disabled person in a relationship I look at things a little differently. If you boil it right down, these two things are an amazing basis for a relationship. The three of us build more and more layers on top, but they are the sturdy structure it’s built on.

People have many opinions about my relationship style, being a disabled person in that relationship and even my orientation (I’m asexual – I feel romantic attraction and I love my partners, and not feeling sexual attraction has nothing to do with my disabilities, it’s just as “normal” as being straight, gay or bi etc.) I even enjoy some of the views as some people are genuinely, happily interested. But when it comes down to it, I have something amazing and no one’s opinion of it will change that.

I’ll never stop being amazed they believe me, they understand me and they still want me. They make me stronger; they make me believe I can fight this and get through anything that gets thrown at me.

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Originally published: February 14, 2017
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