Loving someone with a disability: an invisible disability
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What I learned from loving someone with a disability: an invisible disability
Watching my partner try to navigate a failing health care system, much less get out of bed every day, has been a sobering experience, to say the least.
Sometimes, strangely enough, being with my partner reminds me of something that happened to me as a teenager.
One day when I was sitting in my living room when I heard a quick snap!
It was an enormous painting that hung over our fireplace, falling off the wall. I remember watching it, seemingly in slow motion, as it came down from the wall, breaking everything on the mantle until it eventually crashed onto the floor.
It happened so quickly that I couldn’t stop it, but so slowly that I could still experience the complete and total helplessness of watching everything come apart.
Being the partner of someone with a disability, especially an invisible disability, can sometimes feel like those moments – so painstakingly slow, seemingly endless, and yet you are still too helpless to stop it.
A year goes by, three years go by, five years go by. The pain your loved one is in is still the same, if not worse; you wonder how so much time could pass, and yet how little the prognosis has changed.
Watching someone suffer, especially someone you love, is its own personal hell.
And worse yet, it feels like you can’t express just how desperate you are, because you want to stay strong for your loved one.
While my pain will never compare to the pain my partner experiences every day, I do want to create a space to talk about the experience I’ve had as a partner, with the hopes that it can validate what other partners, guardians, and loved ones are going through.
Here are a few things I’ve learned loving someone with an invisible disability, and if you’ve ever loved someone with an invisible disability, you might know what I mean.
Loving someone with a disability taught me to accept feeling completely and totally helpless
I’ve always been the kind of person who wanted to fix everything. My partner would tell me about a problem they were having, and I would pull out a pen and pad of paper, meticulously taking notes and brainstorming a solution.
I thought that there was no problem on this earth that I couldn’t outline our way out of. No issue could ever rival my pros and cons list, my Venn diagrams, my research savvy. But I was wrong about that.
At some point or another, I realized that my partner’s disabilities were not a problem I can or should “fix.” I noticed that my lists only created more stress, my research was all information that my partner had already read before, and my insistence that I fix everything only made things worse.
R, bless their heart, was already trying everything they possibly could; if there was a solution, R would have already found it.
I had to learn how to accept the helplessness that I felt; I had to accept that my so-called “solutions” and my detailed outlines were no match for fibromyalgia, chronic fatigue, and mental illness.
Often times these “solutions” had nothing to do with my partner and everything to do with the fact that I was unable to accept the reality of my partner’s struggles, and unable to cope with my feelings about it.
My partner did not want me to fix things.
And worse, I couldn’t fix things. My partner just wanted me to help make the every day a little better – with our Netflix dates, helping to cook dinner, accompanying them to appointments, and eventually, supporting us financially when R couldn’t go back to work.
Realizing I was helpless in this situation was a tough but necessary pill to swallow, so I could finally tune in and do what R needed from me instead of what I assumed they needed.
Loving someone with a disability taught me that even the most compassionate partner will say the wrong thing
I write about social justice topics for a living and I grapple with bipolar disorder. You would think that this would make me an ideal partner for R, that I would be able to be compassionate in the way that ze deserves.
But you would not believe the kinds of things I said to R when things got tough – I said things that were completely terrible.
For example, when ze left the workforce and I was left supporting us, the financial strain led to a lot of distress.
I remember one night, when I was panicked about whether or not we would make next month’s rent, I found myself saying things like, “We all have problems, I wish you could just push through it.”
Holy shit, was that an ableist and problematic thing to say; it was also the absolute worst thing to say to someone who is already suffering.
But what I’ve realized throughout this process is that no partner is perfect. Sometimes, we all reach a breaking point, and we say the wrong things. Being someone’s support through these illnesses can be grueling, and when we neglect ourselves, resentment can fester.
That is completely and totally normal.
So we take a breather. And we apologize, sincerely, and commit to changing that behavior. And when that’s done, we have to forgive ourselves, too – we have to recognize that we cannot be perfect all of the time.
I recognize now that I’m going to make mistakes. I recognize that I’m going to say hurtful things. I recognize that I’ve internalized a lot of ideas about folks with invisible disabilities, and that I have to work on addressing that.
It’s a process, an imperfect one at that when we’re learning how to care of someone who is struggling with invisible disabilities. This means that we not only have to be patient with our partner, but we also have to be patient with ourselves.
Loving someone with a disability taught me that ableism is alive and well
The ableism wasn’t just internalized. The things people have said about my relationship and about R have completely blown my mind – ignorance I never thought I would hear from people that I respected.
For example, a couple months before R and I got married, a “concerned” friend told me that I shouldn’t be marrying R at all. That, at 23 years old, I shouldn’t be anyone’s caregiver, and that R was using their disability to take advantage of me financially.
“You’re young,” they said to me, “Why are you shackling yourself to someone who’s just going to hold you back?”
Another friend told me that by being the sole provider for us, I was simply enabling R’s so-called “dependency,” and that R would never get better because I wasn’t “giving them a reason to be well.”
Yet another friend told me that R was too young to have a disability, and that if R wanted to go back to work, they should just “suck it up and do it.”
Time and time again, I’ve had to pick my jaw up off the floor as people have accused R of being exploitative, of faking an illness, of being lazy, of being a burden.
My partner! My partner in life, someone they didn’t even know – the most compassionate, loyal, funny, brilliant, and wonderful person I know. They talked about R as if they weren’t even human.
I realized firsthand the kind of prejudice people carry against folks who are living with these disabilities, folks who are already doing the very best they can, folks who are already struggling with all this within themselves and don’t need to be scrutinized any further.
It’s cruelty beyond what I’d ever imagined I would encounter – and all this from so-called friends.
Loving someone with a disability taught me that I need to take care of myself, too
You might think that this would go without saying, but I have to remind myself, often, that I need to take some time and some space to put myself back together.
Sometimes I get so caught up in my role as a provider that I forget to go out, to take a breather, to do what I need to do to be healthy. I forget that I’m allowed to enjoy myself; I forget that I’m allowed to step back and nourish myself.
Self-care is so important, regardless of what you’re going through, but it is vital for anyone who is trying to act as a caregiver in any capacity.
It can feel selfish to have a good day when your partner is in bed, trying to manage their pain. You might even feel a little guilty about it, too. But it doesn’t do anyone any good if you’re sinking into the quicksand of despair – it’s not good for you OR your loved one.
What have you done for yourself recently? Take some time. Self-care isn’t selfish; it’s psychologically necessary.
“I found myself saying things like, “We all have problems, I wish you could just push through it.” Holy shit, was that an ableist and problematic thing to say.”
Loving someone with a disability taught me that loving your partner as they are in this moment is crucial
I found myself fantasizing about the days when things would be better.
Maybe one day R would have more spoons, and we could go out more; maybe one day R would have more energy, and go back to work; maybe one day, R wouldn’t have so much pain, and we could take classes together, or see friends more often, and so on, and so forth…
There’s a difference between being optimistic in the face of adversity and building unfair expectations. And my fantasizing sometimes left me despondent, thinking about how I wish R could be instead of loving and embracing who and where R is.
It’s difficult to accept our loved ones in the moment, without getting swept up into who they were prior to their disability (if the onset was later) or who we would like them to be in the future.
But your loved one is living in the moment, right now, and needs you to be there for them in that moment, too. It’s impossible to be present if you’re living in a fantasy instead of reality.
I eventually got to a point where I realized that my expectations were damaging to our relationship.
And so I tried to identify my needs – whether it was a need for intimacy, or more time together, or space for myself – and tried to find a compromise that we could reach, in the moment, to ensure my needs were being met without placing impossible demands on my partner.
For example, if I was fantasizing about going out on a date, we would arrange a date night at home – buy a new kind of ice cream, find a movie we’re both excited about on Netflix, build a blanket fort, and light up the twinkle lights. We would make the special occasion happen at home, so my need could be met without pushing R beyond their capacity.unable to cope with my feelings about it.
If I was fantasizing about R going back to work, I investigated better job opportunities for myself, or reexamined our budget to see if I could alleviate any of the financial stress I was feeling (this, of course, is an ongoing process). We also looked for government assistance and community resources that could help us with the burden.
And of course, if needed, I sought out a therapist or a friend who could hear me out about my frustrations; I made sure I was dealing with my feelings in a way that wasn’t burdening my partner, so I could continue to remain grounded.
It was difficult to accept where R was, but once I became more present, we were able to grow closer again. Living in a fantasy isn’t healthy – for you OR for your relationship.
My relationship with my partner may never be “normal.” R may never have the energy to go out dancing, and ze may always be in too much pain to go back to work. Truth be told, I don’t know what the future holds.
But as time has gone on, and I’ve learned how to better support R and take care of myself, I know that it’s enough to have this person that I love by my side – even with every difficulty, every hiccup, every scare, it has been worth it.
Being the partner of someone with invisible disabilities has been, at times, heartbreaking. It has taken a long time to find a way to accept things as they are, and to be there for R in the way that they deserve. It’s been an imperfect journey, and a difficult one, too.
But with mutual respect and patience, we have built a life together that makes us happy. And I wouldn’t trade that life with R for anything in this world.