I was on Reddit the other day and came across a post by a young man whose fiance was going through some health struggles-- it reminded me of a really pertinent topic for those of us with chronic illness: Interabled Relationships.
Power dynamics are difficult to navigate in any relationship, and the imbalance between a healthy and a chronically ill partner has unique challenges. Where I live, the United States, the ideal for committed relationships is to have equality across the board-- equal financial contributions, equal household work, equal emotional labor. This very rarely, in my experience, is the case-- especially in heterosexual relationships where traditional misogyny leaks into even the most progressive of households. However, it is generally seen as a good goal to shoot for, even if you can't quite make it.
However, this view of equality falls short of, well, equity when taken under the lens of disability justice.
Society has a pretty tall fence that blocks disabled people from being able to participate equally in society. There aren't many social structures that help us out, and those that do exist are difficult to get, with lots of barriers, and easy to lose.
In an ideal world, a world where disabled and chronically ill people are liberated, we wouldn't need to worry about power dynamics in our personal relationships. Society would already be set up to let people like me live independent and happy lives without needing to rely on the goodwill of loved ones and strangers. There wouldn't be many structural differences between a relationship with a healthy vs a chronically ill person.
But, as that's not the world we live in, things are a bit different. The average disabled or chronically ill person is poor, twice as poor as their healthy, abled peers (2013 Disability Status Report). Our employment rates are less than half of our abled peers, and those of us who are employed are almost twice as likely to have only part-time work, and more likely to be employed in heavily physical jobs in the service industry, production, and transportation instead of the less intense management or professional occupations (2019 Bureau of Labor Statistics). Discrimination against disabled people in the workplace is rampant-- over 30% of Equal Employment Opportunity Commission complaints stem from disability discrimination, despite disabled people accounting for a mere 20% of the population (2018 U.S. Equal Employment
Opportunity Commission) and only 6% of the US workforce (National Service Inclusion Project). And along with lowered employment rates, the average disabled person in the US pays an extra $11,637 per year in disability-associated health care expenditures (2006 Centers for Disease Control and Prevention). It's no wonder we're poor!
It's not difficult to see that society is failing its disabled members, and unfortunately, the only people available to pull up that slack are our friends, family, and romantic partners. If you are a part of a subculture where one's spouse is seen to have the greatest responsibility for caregiving, and asking for help from family is seen as shameful (or if you come from generational poverty and there simply isn't any help to give) then romantic entanglements become even more "uneven" by the usual metrics.
A chronically ill partner, without disability liberation, is simply incapable of standing on equal grounds with their healthy, abled partners in the real of financial, physical, and emotional resources.
So what does that mean for interabled couples? Work. Lots and lots of work. Making a relationship successful with an unequal power dynamic is extremely difficult. It requires compassion, intersectional education, and tons of communication.
When partners are expected to work full-time to support their spouse while also being full-time caregivers, that's a recipe for caregiver fatigue or caregiver burnout. When someone you love relies on you for the basic necessities of living-- hygiene, eating, medical transportation-- it's not something you can just put off or take a break from. If you don't take your spouse to the doctor, they can't get their meds refilled. If you don't feed them, they don't eat. If you don't help them transport from their bed, they get bed sores. If you can't help them to the restroom, they have to either not drink or wet the bed. Being a caregiver, depending on your partner's health, is basically a second job, with all the accompanying stress. Not to mention, the added pressure of your own work, knowing you don't have someone to fall back on should you lose your position, as well as paying for any additional medical costs. Soon, it becomes difficult to do anything other than just get through the next few hours.
For the disabled partner, there is the struggle of managing their body-- a full-time job in and of itself, and one that accompanies a lot of suffering that is hard for a healthy person to imagine. Chronically ill people often have to micro-manage every part of our life. Can't eat that, or I'll be in pain for the rest of the day. Can't go get the mail, or I won't be able to get to the toilet on my own later. Can't bathe this week, my spouse is working overtime and won't be able to help me if I get stuck in the tub. Not to mention the mental strain of being unable to get out of bed, trapped in a single room for months, even years at a time. Additionally, there is a ton of guilt-- feeling like a drain on family resources, not being able to contribute financially, having to ask for more help than usual during bad days, having to cancel plans due to an unexpected flare-up. Wondering what your partner's life would have been like if they hadn't met you.
It's a difficult situation, no matter what position you are in. If you aren't diagnosed, extra stress can come in the form of terminal diagnoses being thrown out by doctors. Or being refused treatment, being told over and over that there's nothing they can do to help and they don't know what's wrong. For conditions that have ups and downs, there's the expectation of a good day-- suddenly everyone compliments how well you're doing and says you'll be totally better soon, but always the looming feeling of "how long do I have this time?" Trying to shove as much as possible into your good days and consequently cutting them short. Trying to live your life in the moments you have, but a worried spouse feeling too anxious about you going out alone. Watching your spouse try something new, only to have your heart stop when they suddenly drop to the floor.
My spouse and I will have been together 10 years in January, and I have been severely disabled six of those years. It has been a long road, with a lot of mistakes and tears, but I like to think that we've made progress. For all of you other interabled couples out there, especially those just starting their journies, here are some tips I've found helpful. Maybe they can help you out as well!
For the disabled partner:
1. Know your body. This seems like a given since when you're chronically ill you have to pay attention to your body a thousand times more than healthy people do. What I'm really trying to say here is that the mental aspect is important. When you're chronically ill, it's easy to be gaslit by this society which says we have to perform health to have value. By knowing your body well, you can divorce this ableism societal brainwashing from your decision making as much as possible. What you know about your body is fact. Have confidence that there is no one-- not spouse, not family, not doctors-- who knows your body better than you do. Carve this fact into your soul. Make a scientific journal recording how different activities impact your health if having some written proof helps boost your confidence and overcome how brain fog and wishful thinking affects your memory. Once you have confidence in your ability to read your body and make educated predictions about the future, you will have agency that cannot be taken away from you by anyone.
2. Set boundaries like a general on a warpath. Especially with people you love. This doesn't mean you have to love them any less, but you cannot use that love to pressure yourself into accepting things that hurt you. Now that you know that you know your body best if anyone second-guesses that knowledge, treat them like they are being ridiculous-- because they are. This may sound extreme, but when you are disabled there is an inherent power imbalance. Other people are more valued by society and even if they have the best intentions, they will assume that they know what is best for you, even when that assumption is wrong.
This is why you have to overcompensate in the other direction. As much as your body has become weak, you must steel your soul in its place. You know your body, it is yours and no one else's, your word is law.
Your in-laws try to guilt you into a camping trip when you know you can't a) hike to the site b) sleep without things that can't easily be packed and c) deal with the outdoor temperature without large consequences to your health? Sorry, family, this simply won't be possible at this time, but we hope that you have fun without us.
You are feeling a bit better today and being stuck in bed for months has gotten you stir crazy. You want to go out with a friend, but your spouse tells you that you're too sick and they are anxious about you leaving when they aren't there? Sorry spouse! That's controlling behavior, even if it's out of love. They need to manage their anxiety on their own and you aren't going to live in a box for the rest of your life just because they're afraid of you doing anything but laying in bed while they are at work. You love them and understand they're worried, but you'll have a friend with you in case you need help and you are taking care of your mental health. They need to find coping strategies for themself too.
3. Get involved with other disabled people, and read up on disability activism. Now, I am not telling you to be an activist. I know it's an unfortunate thing when people assume just because you're a part of a marginalized group you, therefore, have to be doing all this extra work to change the world. In this case, I'm not saying to read up on disability activism for you to change the world-- I'm saying it for you to change you. There is so much ableist brainwashing and devaluing of disabled people in society, that I honestly think it is absolutely necessary to come into contact with other disabled people, and know basic disability rights concepts, in order for us to grow into self-love.
We are taught to feel guilty for existing, for taking up resources without being able to give back the same, that we hurt our loved ones just by being around them. While it is possible to learn to be compassionate towards yourself without this step, I think it is infinitely more difficult.
Seeing other disabled people out there in the world, reading their blogs, social media posts, seeing their photos... all of this will instill in your heart that people like you are out there. And as you come to love these people, you will also slowly realize that you are deserving of love. Disabled and chronically ill people are very often isolated by society, and online spaces are one of the only places we can interact with one another. We just don't have the energy to go out to keep up meatspace interactions! So meeting folks with similar struggles will really help in your personal development, and grow compassion towards yourself and others.
I recommend disability rights reading for the simple fact that this line of thought takes into account how society currently treats disabled people and helps us imagine a world where things are better. It says, yeah, things suck, but it's not our fault for being born. Some disabled and chronically ill folks, especially those who have been isolated from the community, have a lot of self-hatred because of how they have been abused. And they turn that hatred towards other chronically ill people, judging them, measuring them by ableist standards and ridiculing them. "If I could do this, then you can too, you're just lazy." That is why just reaching out to other disabled people isn't enough, you must also find spaces that are compassionate towards disabled people and have a basic understanding of how oppression dynamics work. Otherwise, you can do more harm than good, as the negative things you have been taught about yourself are confirmed by those around you rather than denied.
Once you have this type of environment, I believe it will help you greatly in the first two steps! You will have a community of people that you can look to for advice, even if that advice comes in the form of reading about their experiences rather than talking to them directly. This will give you the confidence to set boundaries as well. And while you may think taking such a spartan approach will damage your relationships with others, I guarantee that anyone who truly loves you will be able to adjust, though those who wish to take advantage of you may fall out of touch.
Once you are able to set boundaries, you may not be able to do all the things you want, but you will no longer be struggling to survive, pushing yourself beyond your means and constantly living on the edge of a crisis. You can adapt to your new baseline, and slowly, over time, you will be able to cope better and better.
For the abled partner:
1. Take care of yourself. Caregiver fatigue is real, and your mental health will be greatly strained if you don't have people to rely on besides your disabled partner. It will not help them if you run yourself ragged trying to take care of them, instead, you will become unable to do basic things for them and both of you will go to ruin.
Get therapy. Join a support group if you like being around people. Write a venting diary with your experiences just to get it out. Set aside time to spend with your friends and participate in hobbies separate from your disabled partner. Look for local resources to help out, such as non-profits or government assistance programs, which will ease the burden on you. If you're able, hire someone to clean the house every other week. Ask for help from relatives if you can't afford it. Get therapy.
(Really, that is the first and last on the list for a reason. There are free therapy clinics, just do whatever possible to see a therapist. Don't settle for a mediocre one, find one that clicks with you and do the work. Any issues that you already had will be exponentially worse while you're stretching yourself thin with caregiving, you need to get on that shit. The sooner the better.)
When you are healthier, your relationship with your partner will also be better. You can do a better job taking care of them, and more of your time together will be joyful rather than panicked. If you are stable, you will be better able to deal with their health, and acknowledge their baseline as normal instead of living in constant fear of flares. You two can explore your love together, just like two healthy people, without the baggage that comes from disability constantly weighing on every interaction. Properly caring for your health will undoubtedly increase the quality of life for both of you immensely.
2. Accept your partner for who they are, not who they used to be or who you wish they were. This is honestly pretty basic for any relationship, but it is especially important when your partner is chronically ill. Whether you got together before they got sick, or if they used to perform health more for you at the beginning of the relationship, it is easy for an abled partner to start falling into a pattern of "holding out" for when their loved one returns to that state. Thinking that the healthy version of them is the one you fell in love with, and you're waiting and suffering until the day you can get that joy back.
Although it is understandable why people may cope like this, it is a huge disservice to both your partner and yourself. They are the same person as when they were healthy or performing health. But some things have changed, and they aren't ever going back. When you refuse to look at them the way they are now, you are rejecting them. And they can tell. Even if they don't say it, they can tell right down to their very soul. Having been in this place, it is one of the worst feelings I have ever had, when my partner was grieving me as if I had died when I was right in front of them. You do not want to do this to someone you love.
What you need to acknowledge is, your partner's illness did not take them away from you. Your partner cannot be separated from their illness. That illness is a part of them, and who they are, and to accept and love them you need to accept their illness and disability as inseparable from their identity. Even if they hate their illness and curse their body, you need to love them and their body even if it isn't able to keep up with basic bodily functions. Them hating their illness will turn into them hating themselves, and they will be miserable. You need to do everything in your power to love them, to love them when they are at their most sick, and to help them also love themself. Which brings us to my next point:
3. Don't cut off your future. When someone gets sick, it is extremely common for all involved parties to grieve, and suddenly decide that all of their dreams are now for naught. That nothing is within their grasp, and that they have to give up on everything. This cannot be further from the truth.
What is true is that the world is not set up for people who are disabled and chronically ill. However, just because that's how society acts doesn't mean you have to fall in line. Think critically, and separate out what is actually impossible from what is merely impossible to do in a conventional way. For example, I have been almost completely bedridden for six years now. My condition fluctuates, most of the time I'm too sick to get out of bed except maybe one or two limping trips to the restroom. Some days, I have a bit more energy and I can get around in a wheelchair. Other days, I'm feeling even better and I can walk short distances with my cane.
Even at my best, I can't do too much at once. In the beginning, even if I could walk a bit I wouldn't go out because I would need to rest every few feet and there aren't any places for me to sit. However, as I became more adept at thinking outside the box, and more precocious towards society's rules, I started going on short walks and just laying down on the bare ground when I needed to rest. Is it weird to just lay down on the sidewalk or the grass? Well, yeah, generally it's not something people do all that often. But you know what? I needed to do it, so I did. And because I did it, I could go outside instead of sitting alone in the house every day. (Of course, take safety precautions-- always bring a phone and a spare portable charger. Bring water, either in a small bag, fanny pack, or thigh pack.)
And at my worst? Well, the feeling of not being able to leave home when I'm feeling awful is not a good one. I started feeling like my life was on hold whenever I was sick, and I was just waiting until I got just a little better. But recently, my partner helped take me out to dinner in my wheelchair on a day I was so sick I couldn't even lift my arms. And actually, it was really nice! I couldn't sit forward and feed myself, so he brought the food to my mouth and helped me eat and drink. He sat beside me at the table instead of across from me, so he could help out and hold my hand as it rested in my lap. And it wasn't the same as if I could sit up and engage the way I can while I was healthy, but it was an amazing reminder that my life doesn't have to stop just because I was sick. And despite being one of my worst days where I could barely keep my eyes open, he accepted me and treated my condition as normal because, well, for me it is. Being able to feel normal even when my health was rock bottom is a gift that means more to me than any other I have ever received to this day.
The moral of the story is, don't just decide that you can't do things because your partner is sick. Actually look at the situation, and what limitations your partner has, then think of what supports you might be able to put in place to help. You will be surprised at the number of things that are now within your grasp that you had prematurely given up on! It won't be exactly the same, but. in truth, you don't need to do things the same as a healthy couple in order to be happy. You can do things in a way that works for you and your partner to can attain a wonderful, normal happiness that no one can take from you.
There is more advice that I could give to either side, but I think that this is a good starting point. Relationships are hard, and they take a lot of work, but we can do amazing things together that we aren't capable of doing alone. Every relationship is different, so as always take what you need and throw out the rest. Until next time, dear readers, I am always rooting for you.