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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5 Totally Normal Questions Transgender People May Be Afraid to Ask, Answered

One of my favorite concepts that I’ve encountered as an activist is the idea of “holding space.”

To break it down further, “holding space” is about making room for certain experiences, feelings, or perspectives to be acknowledged and affirmed that may otherwise be pushed aside or invalidated.

Holding space can be powerful. I’m a big believer in giving people the space to open up – and in doing so, building greater understandings of where someone is coming from. A little affirmation can go a long way in making someone feel whole.

And one thing that I’ve noticed as a transgender person is that people hold very little space for us.

Society at large has a very particular idea of what the trans experience is – and it doesn’t give us room to have honest, real conversations about what we’re going through, especially when it contradicts this narrative.

This leads us to struggling internally with some big questions that we’re afraid to ask – because in asking them, we’re fearful that it undermines our identity or will lead others to question our authenticity.

So today, I want to hold a lot of space for the complicated feelings that sometimes arise when we’re coming to accept ourselves as transgender.

Because what we’re told is that we’re born with a crystal-clear understanding of our gender, embark on binary medical transition, and achieve ultimate happiness and certainty. Right? But what I know from experience is that, for many of us, it’s much more complex than that.

So let’s talk – and I mean really talk – about some of the questions many transgender people are thinking about, but might be afraid to ask. And together, let’s hold space for all of the complicated feelings that arise as we explore them.

1. Am I Really Trans? What If I’m Making This Up?

Confession: I ask myself this a lot.

“Wait, Sam,” you might be saying. “You write publicly about your identity! You’re active in the community! You’re even taking hormones! And you mean to tell me that you’re unsure if you’re trans?”

Yes, that’s precisely what I’m saying.

In fact, I can assure you from firsthand experience that many, many transgender people grapple with this question – even years into their transition.

And I have some theories as to why, too – if it helps.

If someone told you your whole life that you were a terrible dancer and suddenly you received a first prize trophy for a dance competition, you’d probably feel like an imposter, right? Similarly, when society tells us we’re cisgender (and that being cis is the only option), it can take years and years before we feel secure in ourselves as trans.

Not only that, but trans people are often called into question for not being “trans enough,” are accused of “faking it” for dubious reasons, and are met with disbelief when we first come out.

There’s this culture of interrogation around transness – namely, that trans people have to prove that they’re trans (to get respect, to get healthcare, to find support).

We constantly have our validity called into question by cis and trans people alike. It leads us to internalize this voice of doubt and to intensely question ourselves as society at large does to us.

Feeling invalid or like an imposter is actually a totally normal thing to feel as transgender. It can be difficult to believe in ourselves when people seldom believe in us.

Getting past that hurdle can take time (look at me, I’m still trying), but it’s good to keep this in perspective and remember that feeling this way does not undermine who you are or make you any less “trans” than someone else.

2. Is It Okay If I Wasn’t Always Like This?

The short answer: YES! That’s absolutely okay!

Unless you screamed, “I’m queer and I’m here!” as you exited the womb, it seems like society is dissatisfied with trans people when they come into consciousness at a later age (it’s actually a double-edged sword: We’re too young to actually know, or we’re too old and we’re supposed to know sooner – we can’t win!).

The dominant narrative says that transgender people are expected to have always known – on some deep, intrinsic level – that we were destined to identify with a gender other than what we were assigned at birth.

But we all have reasons for when we came to terms with being transgender.

For me, it was trauma that delayed my realizations around my gender. For others, they didn’t know “transgender” was even a thing and never thought to question their assigned gender. And for some, their safety was at stake if they tried to explore their gender.

Whatever the reason, people come to terms with being trans at different places in their lives.

And there’s no “right time” or “correct way” to arrive at that conclusion – whenever you discovered your gender identity, you are completely valid, and it doesn’t mean you are more or less trans.

Identity in general is very complex – and everyone, trans or otherwise, will grow and learn about themselves at their own pace. Figuring out who we are doesn’t happen in a day. It’s okay to take your time.

Instead of viewing it as a race in which other trans people are your competitors, try viewing it as a journey that is for you and you alone. It’s my hope that the trans community will be beside you, cheering you on.

3. What If I Regret My Medical Transition?

So it’s important to first say that not all transgender people will medically transition. That’s a completely valid choice; medical interventions do not make someone more or less trans.

But for those of us who do pursue some form of medical transition, it’s unbelievably common to worry about regret.

Because our validity as trans people is always coming under fire, it doesn’t surprise me that we question our choices – especially when these choices involve some form of permanent or semi-permanent change.

Lots of transgender people worry about transition regret for different reasons.

For some, they may not feel ready to make such a big change because of other issues they’re grappling with. They may not feel prepared to come out to family, which medical transition can require (showing up to a family reunion with a deeper voice and beard without forewarning is apparently frowned upon).

Fears around transition regret can also come from a lack of knowledge – whether it’s myths about surgical regret (often pushed by anti-trans activists) or an “all or nothing” understanding of hormones (for example, the misconception that non-binary people cannot hormonally transition).

For me, I resisted medical transition because I was actually deeply ashamed of being trans (which I’ll talk more about later in the article).

I think if you’re having questions about medical transition, it’s a great idea to seek out a support group, community center, or gender therapist to help you figure out why you have these hesitations.

Fear is a normal part of transition – but confronting those fears can be a major part of healing.

4. What If I Don’t Know Exactly What My Gender Is?

Hey, welcome to the club! Here’s your official badge. Let me teach you the secret handshake and anthem.

Seriously though, I think the world would be a much better place if we stopped putting pressure on people to know their gender identity and, instead, encouraged people to explore their gender identity and expression.

Because while it may seem that most people are incredibly sure of themselves, I’m betting there is a huge number of people who are actually really unsure. And I’m baffled as to why this has to be a problem.

Uncertainty can be unsettling, but it’s also an opportunity to explore who you are and give yourself permission to step out of your comfort zone.

Uncertainty is not, however, proof that you are not transgender or an indication that you are “less than” other trans people.

I feel like my understanding of my gender changes by the day, sometimes even by the hour.

Uncertainty can often mean that you’re on the right track – that you’re moving away from what felt safe to open yourself up to the possibility of something more honest and fulfilling.

So I say embrace the uncertainty! It’s not at all a bad thing – and I, as well as many other trans people, know it well.

5. If This Is My Truth, Why Do I Feel So Ashamed?

The hardest thing about being trans, for me, has been coming face-to-face with the fact that I deal with shame and guilt around being transgender.

When you grow up with the idea that there’s a “right” and “wrong” way to do gender, it’s a perfectly reasonable response to suppress or resist who we are or who we want to be in favor of what feels safer or more socially acceptable.

We’re taught, in subtle and overt ways, that straying outside of “gender norms” is wrong, disgusting, embarrassing, or even immoral. It’s normal and even expected to feel ashamed in a society that teaches us to be ashamed if we are not perfectly cisnormative.

In this way, being proud of being transgender and being ashamed are not even mutually exclusive – you can be proud of your identity but also grapple with the shame that comes with claiming it, and they’re both valid emotions and experiences.

My shame around being trans led me to grapple with every question on this list.

Shame convinced me that I was “making up” being trans because I couldn’t deal with the truth. Shame made me question if my journey was valid because it felt like I was doing it “wrong.” Shame made me fearful of medically transitioning because I feared my own happiness. Shame left me suppressing my identity and making it difficult to ever feel secure in myself.

I’ve written before that I didn’t even want to be transgender and compared being trans to the stages of grief (if you’re dealing with shame, I encourage you to read them or bookmark for later). The responses that I got to these articles pointed overwhelmingly to the fact that shame is a common part of the trans experience.

I talk about shame not because I want to discourage people from being trans – it’s because I want us to be honest and to validate the very difficult emotions that come with being trans in a transphobic society.

If you feel ashamed, you aren’t alone.

To deal with my own shame, I’ve found it helpful to talk about what I’m going through with other trans people, to seek out support groups (online or offline), to find a trans-competent therapist, and to journal about my transition so I can be aware of these feelings as they come up.

The important thing to remember is that shame does not have to make your decisions for you. It doesn’t have to hold you back. And feeling shame does not make your truth any less real or your identity any less valid.

***

There’s one last feeling I want to hold space for. If you read this article and found yourself saying, “Wow, this is me,” I want you to take a moment to sit with that feeling.

The feeling of being validated, seen, recognized.

I want you to remember this moment the next time you’re struggling with these questions, and to know, always, that you are not the first person to ask these questions and that you aren’t alone in what you’re feeling.

Too often, we’re afraid to be honest about our experiences because we fear that being this vulnerable opens us up to be ridiculed, interrogated, and questioned. As trans people, we already face this kind of interrogation in our daily lives – so it makes sense that we hold back on what we’re struggling with.

But I want to encourage you to open up.

At the very least, I want you to acknowledge the weight that you’ve been carrying around in trying to shoulder this alone. I know that weight well. That weight has kept me down for a long, long time.

It’s time to chip away at that heaviness. Let’s start here: I want you to know that your fears, questions, and doubts do not undermine your truth or your identity.

You are enough. And what you’re going through and the feelings that come with it deserve validation and respect.

You, my friend, deserve validation and respect. And I hope that this article is just the beginning of all the space you’ll hold not only for your own struggles, but for the struggles of others in our community as well.

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This piece that I wrote originally appeared at Everyday Feminism.

Maybe My Mental Illness Does Define Me. And?

Every so often, I’ll get an email from a reader that says something like, “Sam, you can’t let your mental illness define you! You are so much more than that!”

(Has anyone else noticed how this is a distinct theme in my life? Since when does everyone know me better than I do? But OK.)

What if I told you that my mental illness does define me? And what if I also told you that I am much more than that? That these two realities are not mutually exclusive?

I know, it’s mind-blowing.

Fun fact: I have early onset bipolar disorder, along with generalized anxiety and OCPD. Which means, for most of my life (if not all of it), mental illness has shaped and impacted my lived experiences.

It is the filter through which I have seen the world. It’s as ubiquitous as the air around me.

The ways that I struggled to adapt in the face of this trauma has taught me so much about who I am and where my values lie. It has taught me resilience, persistence, and optimism; I’ve also glimpsed a kind of darkness and despair that has undoubtedly left its mark on me.

So when someone tells me that mental illness doesn’t “define” me, I’m totally perplexed.

How could something that I’ve grappled with for my entire life — something that has not only impacted and contextualized my experiences, but also helped to reveal the character and values that I embody — have no bearing on what defines me?

People will go ahead and define themselves based on the weirdest things, like their taste in movies or their passion for knitting or their sailing hobby (no judgment here, you do you). But I can’t say that my experiences with mental illness are a major part of who I am?

I think what I find particularly annoying about this suggestion is that the person who says it to me is basically saying that they are in a position to determine what does and does not define me.

And, you know, it’s almost always someone who has no experience with mental illness.

Which begs the question: Why are people of privilege always trying to overwrite the narratives of folks who are marginalized? Why do they not trust us to tell our own stories, to name our own identities?

As a transgender person with mental illness, this is especially frustrating. Everyone has an opinion on my identity and how I should (or shouldn’t) talk about it. They know my gender better than I do. They know my illness better than I do.

Apparently everyone but me is an authority on my life.

So many people of privilege have heard me articulate my truth, but instead of accepting it as I’ve written it, they insist on squeezing me into a framework that they prefer — whether it’s misgendering me or asking me to separate who I am from my disorders, the implication is that my identity does not belong to me and that my lived experiences are invalid.

The simple truth is that I do not know who I am without mental illness because I’ve never lived a life without it. 

Does that make me a “perpetual victim”? Does that mean, while I wallow in my past trauma, I’ll never be able to find happiness because I’ll be stuck in the past?

Uh, no. I’m pretty sure that’s not how it works.

But it’s weird how many people write me to suggest that I won’t be happy if I keep talking about what I’ve been through. They seem to have missed the memo — I am happy. Being silent about what I was going through was one of the major sources of my unhappiness, actually.

Coming face-to-face with what I’ve been through, writing about it publicly, and integrating it into my identity has been super empowering for me. I’ve let go of the shame and sadness and, instead, begun to do the important work of healing by no longer attempting to outrun my past.

I’ve found community, too, in being honest about my struggles. That community has been essential in affirming my experiences and feeling whole again.

I’m not a big believer in pretending that my trauma never happened. I actually believe in confronting the scary shit so that I can begin to heal. If that makes me a victim, I don’t really care. By all means, call me a victim if it helps you sleep at night.

Honestly, though, even if I chose to label myself a victim and described my experiences that way, that would also be my prerogative. I can choose to engage with and process my suffering however I damn well please.

This obsession with telling people they shouldn’t call themselves victims or identify with their struggles — as if there’s anything wrong with affirming what we’ve been through — seems to imply that we should ignore the realities of our lives and, instead, pretend that our pain does not exist.

This whole conversation around not defining ourselves based on our struggles (or otherwise taking on a role of “victim”) looks to me like a really shitty attempt at erasing and overwriting the experiences of folks with trauma and/or disabilities.

I’m not sure I’ll ever fully understand the impulse to tell me how I should and shouldn’t identify, but what I will say is this: Until you’ve lived my life, it’s probably safe to say that I have a much better idea of who I am than you, Reader-Of-One-Article-I-Wrote-Six-Months-Ago.

(Do you go up to someone you’ve just met and say, “I know your whole life story”? Because, if not…)

And really, let’s be honest for a quick sec. Before you tell me that being a “professional victim” will never make me happy, it might be better to work on your own insecurities first — starting with why me being honest about my trauma is so damn threatening to you.

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