5 important mistakes I made as a partner to someone with chronic illness.

About seven years ago, while at university, I fell in love.

Ray was easily one of the most brilliant and funny people I’d ever met — they stole my heart almost immediately.

While they can seem soft-spoken at first, they’re incredibly passionate and opinionated when you get to know them. They’re empathic, geeky, and tender. And they balance me out, too: their careful and considerate nature has tempered my impulsivity and reckless optimism many, many times.

In other words, we fit together wonderfully.

I knew Ray was special from the moment I met them. It probably doesn’t come as a surprise, then, that we later got married — and I’m very lucky to be able to say that after nearly seven years together, we are raising two perfect fur babies together (and more succulents than I can possibly count).

In many ways, ours is a love story that seems pretty typical. But in reality, it’s not quite.

Ray has a number of chronic illnesses, including Ehlers-Danlos syndrome (EDS) and arthritis. With this comes not only a lot of physical pain and mobility issues but total exhaustion day after day.

After years of being partners, I’d like to think I know a thing or two about supporting folks in my life with chronic illness. But as much as I hate admitting this, these were lessons that I often learned the hard way.

I want to share some of the mistakes that I’ve made, because I’m hopeful that other loved ones can learn from my experiences, and in doing so, they can offer the kind of support that chronically ill folks truly deserve — support that is unconditionally affirming.

So where did I mess up, exactly? Here are five of the big blunders I made, and what I learned as a result.

1. I assumed that we had the same definition of ‘happiness.’

I’m happiest when I’m busy. I know this about myself. If I don’t have several projects up in the air, a regular dose of sunshine, consistent friend dates, and a lot of yoga on the weekends, I’m not very functional.

Particularly as someone with obsessive-compulsive disorder and ADHD, the pace of my life and what’s on my calendar determines whether or not I’m functional on any given week.

Sometimes I would look at how my partner’s life was set up, though, and I’d wonder if they were making the “right” choices — just because their life didn’t look like mine.

How did they survive, I wondered, without regular social outings? Wouldn’t they feel better if they got out a little more? At first, I didn’t slow down to consider what happiness looked like for them. I used my own definition assuming that what worked for me would obviously work for them.

The reality is, though, that what makes me feel good is not necessarily going to make Ray feel good. What’s empowering or energizing for me could actually be completely draining, counterproductive, or even harmful for them.

I logically understood this. But even so, I’d still slip up at times, assuming that their life was lacking some key ingredient that their own recipe never called for.

In recent years, I started paying much closer attention to how my partner defines happiness. I work to support them in making whatever changes they deem helpful in pursuit of their goals, even if their goals look nothing like mine.

This means celebrating their successes, too, however they define success.

They get to steer the ship; it’s my job as a partner to support them in whatever direction they choose to go, and however they ask me to show up.

2. I had a lot of suggestions — but I wasn’t always making them accessible.

Ray and I have the kind of relationship where we do offer (solicited) suggestions to each other from time to time, always with the caveat that we aren’t pushing and we’re respectful when we offer guidance.

I began to notice, though, that sometimes my advice was consistently lacking something — accessibility.

If I was suggesting that my partner see a specialist, was I also offering to go with them? Was I making sure they had transportation covered? Was I helping them take notes on what questions needed answering?

Or was I just telling them what they should do without a plan of how we could make it happen?

If I was recommending that Ray join me for a particular (gentle) yoga or stretching class, had I spoken with the instructor first to ask if they knew how to work with clients with EDS? Was I willing to pay for a Lyft so that they didn’t have to walk to class with me? Had I researched if that particular activity was safe for their body in the first place?

Offering advice without consideration of how to make it actionable and accessible meant that my “advice” was useless — plain and simple.

Rather than creating additional work for my partner, it’s my responsibility to make sure I’m offering real support and not just ideas that will further overwhelm them.

3. I thought that nudging them to try new things would be helpful.

With my obsessive-compulsive disorder, I often need to stretch just outside of my comfort zone to improve my mental health. It’s helpful, then, when people in my life nudge me to go outside, try something new, and break out of my routine if I’m starting to isolate myself too much.

With Ray, it’s the total opposite. They need to stick to a reliable routine to ensure they have enough spoons to get their work done.

They have to mentally calculate whether or not they can afford to do something differently. If they stray from their routine on an average day, they risk exhausting themselves before they meet all their responsibilities, which can impact them for days or even weeks to come.

Earlier in our relationship, I did a lot of nudging — because I figured inching outside of their comfort zone would be helpful, rather than harmful, like it was for me. While my resistance to trying something new came from anxiety that I could work through, Ray’s resistance was a matter of survival.

That’s why, when we’re supporting any partner with chronic illness, we must always assume that they are the expert on their own experiences. I know now that my partner gets to determine the pace at which they move in and out of their comfort zone.

The best way I’ve found to navigate this is to ask questions! Some examples of what I would ask:

  • “Are you looking to brainstorm ways to feel a little better? Or do you just need the space to talk about what you’re feeling?”
  • “What is the most helpful thing I could do to support you right now?”
  • “Do you have the energy to try something a little different? Or are you on ‘power save mode’ right now?”

I know that sometimes, my partner feels stuck and needs a solid brainstorm to figure out how to address certain challenges. But they get to decide when that happens — not me.

4. I didn’t ask exactly how I should engage with others around their disabilities.

It didn’t occur to me for the longest time what about their experiences I should or shouldn’t disclose. Instead, I focused on whether or not I was comfortable having a conversation, rather than asking Ray what they did and didn’t want others to know.

An example: My partner was unable to work for a period of time because of their disabilities.

At first, I had no problem letting people know if they asked what my partner did for work. But after a while, the judgment from others made me uncomfortable — so rather than affirming my partner’s decision and pushing back on ableism when I encountered it, I eventually found myself being dishonest about our situation.

“Well, they’re preparing to go back to school, so they’re taking some time…”

“They’re freelancing at the moment…”

“They’re waiting for the right opportunity to come along…”

Here’s what I should have done from the start: had a conversation with my partner and asked them how they’d like me to speak about their situation if and when someone asked. 

Maybe they wanted me to have those tough conversations, explicitly supporting their decision to take care of themselves. Seizing those teachable moments could have been a powerful moment for allyship! Or maybe they wanted to keep that information private, and we could instead find a way to disengage in a way they felt comfortable with.

Either way, they should’ve been the one to decide on that narrative — not me.

I know now that it’s so important to check in with them and ensure that I’m having conversations around their disabilities in ways they feel comfortable with, rather than assuming that I know what those boundaries are.

(Which is why I first got their consent to write this article… and then we read through it together to ensure it felt empowering and accurate!)

5. I unconsciously carried the assumption that there was or someday would be a ‘solution.’

When it comes to chronic illness, there isn’t always a “solution.” There can be management, maintenance, even treatment… but in many instances, I’ve had to learn to accept that sometimes survival and self-care are the very best we can do.

Many of us grow up with the idea that if we go to a doctor, they have the answers, and that we’ll eventually be “better.” It’s a comforting thought, but it doesn’t hold up in reality, especially when we’re talking about invisible illnesses.

I had to learn quite early on that more often than not, doctors don’t have any answers for Ray — and sometimes they do more harm than good. Not every appointment was going to yield something helpful. No matter how persistently we advocate, there’s no guarantee that we will ever arrive at a “solution” that magically helps Ray feel good (or even okay) in their body.

Doctors don’t always have answers. In fact, most of the time, Ray knows a hell of a lot more about Ehlers-Danlos Syndrome than their doctors do.

I’ve had to stop living in this fantasy world where Ray someday arrives at a magical “cure,” and instead, engage with the reality of their disabilities. That often means waking up each morning, checking in and asking, “What’s the very best we can do today?”

The truth is, there are ups and downs with these illnesses — sometimes a lot more downs than ups.

Was I prepared for that? If I wasn’t, I had better get my shit together.

I love and support my partner not in spite of their disabilities, but as a whole person, which is inclusive of every struggle and identity that they hold.

Loving someone that way means letting go of the idea that “health” is at the finish line — or that there’s a “finish line” at all — and instead, I focus on whatever goals Ray aspires towards, even if that goal is simply surviving another day.

What do they need from me as their partner to make their goals and aspirations a reality? That’s where I devote my energy now, and Ray gets to set the pace and the path forward.

The assumption that things will someday “improve” or “get better” — and that we, as partners, are in some way responsible for making that happen — has to be dismantled.

Otherwise, we’re not really loving them, are we? We’re setting up an expectation, rather than loving the person who’s right in front of us. It’s an illusion that’s rooted in a very ableist frame of mind.

Our job is to love our partners as they are, body and soul, here in this moment. And that means embracing an uncertain future — knowing that while love may not protect us from every challenge we’ll face together, its warmth and light can sustain us.

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cropped-heartThis blog is not sponsored by any fancy pants investors that are trying to sell you stuff.

It’s funded by readers like you via Patreon!

Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.

 

Photo by Hunter Newton on Unsplash.

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