Beyond Self-Care Bubble Baths: A Vision for Community Care

During a particularly difficult period last year, my depression made me unable to leave my apartment for three weeks straight. The takeout boxes, dirty laundry, and misery started piling up, but living alone made it so that nobody had to see me in my squalor. I was ashamed of my disorder and ashamed to ask for help; I didn’t want to burden my busy, also-struggling-in-their-own-ways friends. I didn’t reach out because I didn’t want to ask them to perform extra emotional labor. I didn’t want to be a burden.

But I need more than I can give. I am a burden. And that’s OK.

When I finally dragged myself to Facebook to post a cryptic depression-related call for help, one of the first comments I received was a link to an article entitled “How to take care of yourself when you’re in a funk.”

I wasn’t in a “funk,” I was in a battle — but regardless I gave it a read. Taking baths, sleeping well, cleaning my apartment, and going to yoga classes all seemed like great ideas, but I couldn’t do any of them. I couldn’t do anything. I couldn’t even take care of myself.

Seemingly every week, a listicle will appear in my social media feed touting a new take on self-care. Self-care for activists, self-care for feminists, self-care for broke people, for busy people, for teachers, healers, people of color. A quick search for “self care” on Autostraddle retrieves dozens of articles. I don’t want to discount the importance of self-care; it’s so necessary and the fact that it’s becoming more mainstream is fantastic. But it isn’t perfect.

Critiques of the self-care movement abound, but self-care rhetoric isn’t problematic just because its suggestions take time and money and burden already too-full schedules, or because it assumes that our movement work is what is plaguing us rather than giving us life, or because it erases the normal day-to-day things that many disabled people already do to take care of themselves. These critiques are important, but they don’t go far enough.

If I and other people with certain disabilities are going to survive, we need care — and not from ourselves. Because when it gets really bad for me, self-care is literally impossible. In those moments, I need community care.

I need a support network of loving comrades who are willing to do the work it takes to make sure I don’t die. I need people who will check in on me and see what I really need when I make a cryptic Facebook post, not just comment with hearts and “sending positive thoughts!” messages. I need dinners made, laundry done and my apartment cleaned, rides to (and motivational support to attend) therapy.

We are taught in progressive movement to take care of each other, but the assumption is that it’s an even-sum game: I take care of you, you take care of me. I love caring for others, and do as much of it as possible: when I had money, I would donate to struggling folks in the community, buy and deliver food to sick friends, or take someone out for pampering. When I didn’t I would host folks on the couch, provide emotional labor for those who needed it, or make art and write kind things to give to others. But it’s not even. Sometimes — often — I need more care than I am able to give.

Self-care rhetoric teaches us to not be a burden on others, because it’s almost entirely focused on what we can do for ourselves. We’re taught that we have all we need, that the power for transformation and thriving is within us, just waiting to be harnessed. That we alone can beat back the demons plaguing us and come through to the other side refreshed and ready to fight again. To do everything that a self-care article suggests is impossible for most of us; doing even one thing is impossible for some of us. And in a culture that demonizes the burdensome, how plausible is reaching out and asking for help?

The term “community care” has been thrown around recently, but usually to indicate the movement work we do for each other as groups; it seems to be about “Community” writ large. “Community care” tends to focus on things like marching or rallying for political aims and more just legislation, or “how to be an ally to X community,” or working for things like better infrastructure in low-income neighborhoods. These are incredibly important. But when I think about community, I am more interested in what small-scale, interpersonal social networks can do to take care of each other. I want to see what it looks like when a community can take care of the individuals within that community, especially when those individuals can’t take care of themselves.

When I envision myself living my best life, depression isn’t a part of it. I always have the energy to feed myself. I am never chained to my bed with suicidal ideation, petting my cat because it’s the only thing that makes me want to keep living. I don’t skip my meds. I make myself healthy food and have enough money and time to get mani-pedis and I’m active in the movement and I partake in my hobbies and go out with my friends. And I can take care of myself.

But that version of my best life might be impossible. It’s entirely feasible that my brain chemistry will never change, that this spectre will always hang over my life. Given this reality, what does my best life look like?

It looks like this: I have a strong, tight-knit community of caring folks that holds me when I can’t hold myself. I have a network of people that check in on me when they realize I’m in the sunken place instead of waiting for me to reach out because I probably won’t, figure out what my needs are, and take care of them for me. Friends and comrades feed me, get me into the shower and dressed, help me look for jobs that I can handle, gift me bath bombs and tea and booze and cigarettes and herbal medicine. They donate money. And I don’t pay them back, at least not right away. And that’s OK.

Because of the pervasive stigma in our culture, bolstered by self-care rhetoric, around being a burden on others, people with disabilities are often left fending for themselves in whatever ways they can and suffering as a result. The stigma around asking for too much help is an ableist stigma that we have to break down. The societally acceptable form of the burden usually falls on “significant others” like our spouses or family members. But it can be too much for such a small group, and many of us don’t have access to significant others or family anyway. If I’m going to survive, I need a team on my side. I offer a lot to the community in other ways when I’m healthy, but even if I didn’t, I still deserve to live.

Something important I’ve realized as my depression has gotten worse is that, contrary to my shame, many members of my community are more than happy to carry that burden. After that initial Facebook comment, I started to receive messages and texts, saying “How can I best support you?” This has become my favorite question, and it’s the first one I always ask whenever someone I know is struggling. I don’t do this because I feel guilty, or feel like I need to repay them for the care they’ve given me. I do it because I want to, and it feels good, and I love my people. And sometimes, it’s the part of “movement” work that I’m best at.

My community members take care of me for the same reason: it brings them joy, it gives them purpose, and it’s maybe the only “movement” work that they are capable of, too, for whatever reason. Taking care of ourselves, surviving and thriving, as the self-care rhetoric reminds us, is a radical act. And so is taking care of each other.

Rugged, self-sufficient idealism doesn’t work for those of us with brains or bodies that require other people’s support in order to make it through this world. An over-reliance on self care reifies this American cultural touchstone rather than challenging it. We need to destigmatize burdening others, normalize asking for help, challenge ableism. A shift toward a community care model could be a means by which we can do just that. We could focus on learning “10 Ways to Take Care of Your Friends Who Are Struggling,” instead of ten ways to make our baths more relaxing.

Community care means liberation for those of us who struggle alone, fearing the burden we place on others. It means we can receive the support that we need, the support that keeps us alive. The next time someone you know is going through it, instead of telling them what they can do for themselves, try asking “How can I support you?” if you’re capable. Because if we’re all going to make it through to the other side, some of us will make our own way and others of us will make it only because of the care of others.

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Abeni Jones

Abeni Jones is a trans woman of color artist, educator, writer, and designer living in the Bay Area, CA.

Abeni has written 90 articles for us.

50 Comments

  1. <3 <3 <3 Thank you for this so much!!! Wow! This is amazing, like definitely reading multiple times! Community care like this, like taking care of the people in your life is so important to me. For me it often looks like baking treats for the people I love, but I always want to expand that and show support in lots of ways.

  2. I really needed this post, so thanks for writing it and the timing. I just got diagnosed with type 1 diabetes one month ago and have really been struggling with all the 300 physical, emotional, psychological, social changes it has entailed. Especially feeling like a burden and feeling guilty for taking more than I’m giving, particularly as caretaking has been such a huge part of my identity and fulfillment. This post felt like permission, finally, to breathe and take and not hate myself for when what I need and ask for are disproportionate to what I’m giving. At the same time, it reminds me to think about how I, in this new body, can still provide support at the intersection of my abilities and someone else’s needs. You did so great writing this <3

    • wow! you totally have permission to ask for help and support from others even if it’s not 100% reciprocal. thank you so much for this comment!

  3. Thank you so much for this. I am Autistic, and I still apologize to my mom(who is the most amazing person on the planet)for things like not knowing how to create a resume by myself. She tells me time and time again that she loves me and that I have nothing to apologize for, yet I still feel like a burden and an inadequate daughter. Pieces like this one are why I love Autostraddle.

    • Lots of love from a fellow autistic woman <3
      I know how easy it can be to feel like a burden, but try to remember that you are deserving of all the help and support you need. You matter.

    • <3 you have nothing to apologize for!!! it's so hard to believe though. I apologize for being a burden constantly. writing this and the responses has been my way to try to work through it. <3

  4. Yes. Yes yes yes yes.

    I’m too drained this week to have much in the way of words, but this is good and I’m glad it’s here for people to read.

  5. This is great. Last year I needed a lot of help from my community but this year I’m in a better position to help others. This was a great reminder to reach out to folks and not just wait for them to ask. Thank you.

  6. This was beautiful and so much a thing I needed to hear as someone who struggles with mental health. It’s heart breaking when you keep hearing that everyone’s goal for you is that you can “take care of yourself” when you’re so afraid of being a burden. This said so much I believed and couldn’t find words about reaching out to care for one another.

  7. Wowowowow this is wonderful.
    I’ve been fortunate enough to get my anxiety and depression under control these last few months, but with returning to school soon this is such a great reminder.

  8. I have eczema and it may not sound like a bad problem, but it is painful, takes up space, and make me feel ugly. And itchy, it is a constant thought on my mind, so painful. I pretty much have my problem under control, but I’ve recently had a breakout which is now subsiding thank god. I need community care right now, I do wish I had someone to help me especially because I am on a special diet and can’t be around certain things (pets, perfume, et cetera) and a lot of people don’t understand. And the comments people make omg so rude. I am pent up in the house right now, but I can’t leave because it is too hot and I already agitated my skin from the sun once. I have cabin fever!!!!!!!!

  9. having a strong support system is so important! and also, really kinda hard to create when you’re an adult in a new city. like, sure in school when everyone is new to campus it’s easy to meet like-minded people, make connections, etc. but making friends as an adult outside of work is tough. i’m all for a healthy mutually caring support system that understands the need for give and take among and between friends-i’m just not sure how to go about creating (or joining) that community from scratch… any ideas would be welcome!

    • I feel you on this. It’s taken me a few years of living in a new city by myself to start building a community, and figure out how to build one that is supportive and can provide care during challenging times. Mostly for me, it’s been trial and error of talking to new people and seeing if there is a connection (sometimes through okcupid looking for friends, sometimes asking people I know to set me up on friend-dates with people they think I might click with, sometimes meeting people through shared interests and movement work). After some time building friendships, it’s pretty clear to me whether I want people in my life in a close way, where we can rely on each other for support, or whether it feels like a more casual friendship. Once a new friendship feels emotionally connected, I like to have a conversation about how we can support each other..

    • it’s so hard. I’m in a new city working on this right now too! you have to be SO intentional about deepening friendships; it’s so scary and I’m struggling with it right now. My best friend just moved out of town and I am scared that the community I’ve been envisioning will be really difficult without her!!

      But I have a few close friends, and I have a few acquaintances that I want to build deeper connections with. I’ve found that one-on-one dinner and coffee dates with friends has been really key for me. And then like, sometimes you have to be the one to breach the intimacy gap or whatever. Like, ‘can I tell you about this thing I’ve been struggling with?” and see how they respond. If they’re down, then opening up to them can sometimes free them to open up to you. And you build from there.

      I don’t know!!! IT’s so HARD

  10. I also wanted to say that this piece really resonated with me. I always see those selfcare posts on Facebook and they irritate me too. My selfcare is the bare basics, not indulgence, not pampering. It is refreshing to read a piece that tells it like it is! Thank you.

  11. THANK YOU THANK YOU THANK YOUUUUUUUUUU

    OMFG the individualist “you sort this out yourself sweetie uwu” focus of self-care bugs me so much and I’m SO GLAD this piece exists to counter it. We are not an island on our lonesome, but we keep being expected to act like one, build our own economy and agriculture and infrastructure and healthcare from scratch. Instead of joining up and building archipelagos with mutual trade agreements.

    (This international relations metaphor might be getting away from me a bit)

  12. This is…really important in ways I can’t even articulate right now.

    I don’t know about the rest of you, but I have experiences from when I was a really young adult that make me feel like if I am ever “too much of me,” if I truly ask to be taken care of in any way, I will tax and exhaust the people around me, friends and partners will leave and my parents will be exhausted.

    I don’t think that’s actually terribly accurate, but it means that when I’m depressed or scared or grappling with something, I do it alone. It’s a very difficult pattern to change, but little by little, I’m trying.

    • My dad told me only last week that I mustn’t tell my problems to friends as they will be annoyed and bored… :(
      Personally, I don’t think that’s the case – but at the same time I feel a huge fear of being to much, of annoying people, of not being able to give back what they expect me to.
      The past days I have been quite sick, so I asked my neighbour whether she could buy me some little thing (my friends are too selfoccupied or not in the same town or not close enough friends, so they wouldn’t offer, and I wouldn’t ask, because I know it would ask for a detour). Well, she came back and had some fresh raspberries for me!! As a treat, she said, and didn’t even charge me for them! I was so happy for this gentle extra dose of vitamins (for myself I haven’t bought them in years), and at the same time sooo insecure: I may not have asked her often enough to pay them, so she left with a bad feeling; what could I get her to say thank-you etc. Finally I got her a little chocolate, which she didn’t seem to expect at all, and maybe it would have been alright to just accept to be spoiled? Maybe she wouldn’t have had resentments?

      Argh, I really want to learn this! It is hard, because I grew with a mother who didn’t even give her love unconditionally… (and a father who insited that nothing in life is for free, apart from the friends-thing, above).

      In counseling they only told me to get used to never getting now the affection a child would have needed – I can understand this, because sure, I’m a grown up now – but I feel like I do need a catch up of some sort!
      But maybe something inside of me even closes off before someone can come as far as offering something? Or that I am incapable of receiving something, because a strong voice inside of me would immediatedly yell “no, you mustn’t take it! This is dangerous! Where should this lead to!!”

      How can I learn that I am worthy of getting fresh raspberries (or affection or whatever) just like this??

      • The reason why those ‘affirmation’ things exist is because they do actually help to rewrite old scripts in our brains. It might help to take a breath and say, out loud or in your head, “I am worthy of rasberries.” And even if you don’t really believe it, act as if it’s true.

      • I can really relate to the fear of being too much and the anxiety about accepting help/gifts/support. I’m working on trusting my friends to set their own boundaries as needed (i.e. let me know if they’re not available to help) rather than assuming they’re not available without even asking. It’s hard for me to do, but I’m slowly getting better at it with practice…

        I’m sorry your family has made you feel like it’s not okay to ask for support, but so glad that you have a good neighbor who was kind and helpful to you! I really like @queergirl ‘s suggestion about affirmations – You are worthy raspberries!

        • Thank you both, @queergirl and @leee! This is so scary – but soooo crucial. I’ll keep up. We’ll keep up!
          Plenty of raspberries for you, too!!!

          Argh, theory vs. feelings… As for trying to rely on people setting their own boundaries (after all, they are grown ups and we are not responsible for them), I struggle with irrationally anticipating reasons for being turned down (and fear that) – so I rarely ask, aaaand I fear that even asking pressures people and puts them in an awkward position if they had to refuse – so I avoid that.
          Queergirl how do you try to overcome that pattern of doing things alone and how do you deal with the fear of being too much? (but it’s OK if you want to keep this to yourself!)

          • What was key for me was realizing that sometimes people are WAITING for you to ask for support, because they LOVE giving it.

            I realized this when someone asked me for help, and I felt joy and happiness at being able to care for them. It only stands to reason that some other people must be like this too.

            In the same way that we are often afraid to ask for help, often people are afraid to offer it. Sometimes asking for help from others can be a gift you give them.

  13. I feel for this person, she is clearly struggling and have an important point that they need more care and support than they are getting, and the onus should not be on them to some how do more themselves – but the answer isn’t the ‘community’ to do more, it’s structural solutions – proper funding for regular care and support for people who need it.

    Community/collective care has its place in terms of groups and events aimed at social and emotional enrichment, but it isn’t really feasible or fair to expect people acting entirely voluntarily in the community to provide for such basic daily support needs as to be responsible for someone not to die (!) There’s an obvious tension here between meeting people’s support needs and labour rights – ongoing, day-to-day support needs to be reliable and consistent, but if you need that level of commitment and regularity, it needs to be paid. There is a lot said about emotional labour at the moment, but what about just basic caring labour as well? Care work is work, and so much of it is already done either for free, primarily by women, or at minimum wage (or even sub-minimum wage, when travel and expenses are factored in), again mostly by women, especially working class and immigrant women. The answer is not to demand further unremunerated caring labour from the community, but proper funding for people to get the support they need, and care work to be valued as a skilled and important job, and paid accordingly.

    There seems to sometimes be an idea that community based solutions are more radical, and calling on the state represents a failure of social relations, but I think seeing this as work, with the structures and boundaries around it this implies, is important, not just for the aforementioned reasons of pay, but because a professional relationship removes the complexities of expectations of reciprocity and means it is sustainable and reliable. Generally this article seems to reflect a sentiment I feel like we’re seeing a lot, that ‘the community’ can be neatly divided into people who have needs, and can rightly expect these to be met, and those without needs, who have an endless capacity to give, and are being selfish if they do not. Really we are all somewhere on that spectrum, and move about it over time.

    This sounds a bit ‘Big Society’ (a term the British Conservative government used to romanticise the idea of inidividuals and small community groups taking on core state functions. We should of course do what we can to help others, but this shouldn’t present this as some kind of alternative to proper political, structural solutions.

    • I think both can be true – I don’t read this article as denying the need for structural change at all. I actually read it as pushing back against the same disturbing logics you are arguing against here –
      that it is up to individuals to work things out for themselves. And while you are absolutely correct about the problems of unpaid labor, does that mean that those who are unable to pay (also those most disadvantaged by structural disinvestment from social and health programs) should be left to struggle alone? I read this as arguing for a greater recognition of care labor as activist labor, as part of the same fight that would push for the better government services you point out are so deeply needed.

    • I really appreciate the point you are raising, that community care should NOT be seen as something we do INSTEAD of having structural support. I also agree with @professorqueermo that both can be true, that we need community care as well as structural change.

      In many situations I’ve seen where self-care is not enough and someone needs additional support, I’ve found it so frustrating that funded care (affordable counseling, assistance for people with disabilities, etc.) is often not available – or the care that is “available” is not safe for people to access (employees discriminate against or harass LGBTQIA+ clients, shame clients with disabilities for having uncommon access needs, etc.) I desperately hope for, and am supporting organizations that are working towards, better structural support in the future. But right now, those supports don’t yet exist, and I don’t want my friends, neighbors, and community members to die while we’re all waiting for structural solutions to be implemented. Whether or not it’s fair to ask people to provide care without compensation, I hope my community members will ask for the help they need, and I will do what I can to care for them.

      I’m also thinking, even if I lived in a world with fantastic structural support, I think I would still need community care? Like, I am always going to have access needs that affect my social relationships, like asking a friend to change the time or location of a get-together when I’m not able to leave my apartment, or taking a break during a long event to lie down for a bit. I don’t just need the logistical support (a way for my friend to get to my apartment, a place to lie down at the event), I need compassion and understanding from the people around me. I don’t need every person to always be available to meet my needs in a given moment. (As you pointed out, no one has an endless capacity to give!) Still, I do need people to accept and respect my limitations, and to choose to be supportive of me in the ways they can, regardless of compensation. I need a community that values me as I am, disabilities and all. I guess maybe not everyone would see that as being part of “community care,” but whatever you want to call it, I think it’s something we all need.

      Anyways, I realize I’ve gotten a bit carried away at this point, but your comment just really made me think about a lot of different aspects of this topic. Thank you for sharing your thoughts!

      • Yes I agree with all that you’ve said – of course we currently live under dire circumstances, and people need help now, so we are all picking up the pieces. My point was more that I feel the framing here is more that a ‘network of loving comrades’ taking on core state functions is a desirable state of affairs, a vision to aspire to, rather than framing it as ‘isn’t it terrible that overstretched individuals are having to do what should be the work of social support services’.

        I absolutely agree with community care of the kind you describe – being considerate of accessibility needs in our social interactions, providing some emotional and practical support, running groups, retreats, social events etc. But the kinds of things mentioned here – regularly preparing someone’s meals for them, cleaning their home etc. sounds like a full time job that I don’t think could be sustained on a voluntary basis beyond a short term crisis.

        • I really appreciate your points! I think you misread or I wasn’t clear enough in parts of my piece, though. Remember this part:

          “…contrary to my shame, many members of my community are more than happy to carry that burden. … I do it because I want to, and it feels good, and I love my people. And sometimes, it’s the part of “movement” work that I’m best at.

          My community members take care of me for the same reason: it brings them joy, it gives them purpose, and it’s maybe the only ‘movement’ work that they are capable of, too…”

          I’m not positing that some members of the community take on full-time unpaid jobs taking care of those of us with disabilities. I know that I get joy and energy from taking care of members of my community when they are down, and that because of my anxiety and personality, I can’t take part in big meetings or rallies or marches, and the care I do for my friends and comrades is the only ‘movement work’ I’m capable of doing. I want to do it and I enjoy doing it. A lot of us are that way.

          I’m not asking for folks who are tired, overworked, busy, and don’t like caretaking to take on full-time unpaid caretaking work. It’s also important to note this key phrase:

          “The next time someone you know is going through it, instead of telling them what they can do for themselves, try asking “How can I support you?” if you’re capable.”

          If you’re capable. Obviously on a “voluntary basis.”

          The article is a critique of a self-care movement that doesn’t acknowledge disability. It’s not a call out for people who aren’t doing enough to help others.

          But also, what if instead of folks living in stigma and shame and feeling like a burden on society for having needs that aren’t met by state services, we had a community care culture that made it so they didn’t feel shame for asking for support from the wider community instead of just from blood family and/or significant others? What if there was a whole network of folks to help them so that it didn’t all fall on one person doing “full-time” care work like you noted?

          If we really built community in the way I described and am trying to build in my life, none of the “burden” of caring for others has to fall on one other person. Like I said in the piece,

          “…it can be too much for such a small group, and many of us don’t have access to significant others or family anyway. If I’m going to survive, I need a team on my side.”

          Hopefully we have a community, a team, that all takes care of each other to the degree they are able to in the moment. The community isn’t neatly divided into static “can help” and “needs help” camps, but those roles DO exist. I occupy each one differently on different days. So do most of us.

          The thing is, if we are currently in the “needs help” camp, for a lot of us self-care rhetoric makes it harder to get what we need. And not asking for help because of stigma or shame means that folks in the “can help” camp don’t know that we need help, help that they are willing and able to provide. That’s my point…

  14. This is so important! And actually smthng I have been thinking about lately.. I’m a big fan of self-care but you are absolutely right that sometimes self-care is not possible, especially more so for some people than others. This article came in at the right time for me as I was just thinking about the importance of community and having people you can rely on.. I live in a new city now and one of the things that terrifies me the most is not knowing anyone who I could reach out to for help. It takes some time to build friendship let alone people who you can truly rely on; I do a decent job taking care of myself but when my depression/anxiety is really strong and/or I am sick at the same time it can be so hard to do the most basic things. Thanks for this article and hopefully I get to be part of a community full of support again. I know that was a thing that made a huge difference for me in Nola. Btw I’m pretty sure we know some people in common

  15. Thank you so much for this. I deal with bad anxiety and depression, and I’m on the autism spectrum – I live on my own (with roommates) and my lifestyle is that of a self-sufficient adult. The problem is that I’m not able to be completely self-sufficient, and there is a lot that the people around me could do to help. The kind of community care you’re describing is something I crave and need and feel completely selfish when I try to seek it out – or even think about seeking it out. Reading this piece felt like a balm for my soul somehow, and was extremely validating, which I so appreciate.

  16. I love this, especially the way you articulate the idea that care doesn’t need to be an “even-sum game.” I have chronic physical and mental illnesses, and the extent and types of symptoms I experience can vary wildly from day to day. There are times when I need help just to take my meds and feed myself, but it feels hard to ask for help when I can’t predict whether/when/to what extent I’ll be able to return the favor or pay someone back. I appreciate this reminder that it’s okay to need more than I can give – I’m trying to learn to believe this.

  17. Thank you so much for this. The timing couldn’t be better. A few months back, I decided to take my blog and YouTube channel in a new direction, focusing on self-care (self-love) and acceptance.

    Like you and other have already mentioned, if you are someone who needs self-help, the topic itself can really piss us off. It’s been extremely difficult for me trying to help others navigate the topic or sharing my experience without sounding like the preachy people who I want to kick in the face.

    Because, if you’re like I was, and sometimes still am on my bad days —
    You just. Can’t. Move.

  18. This was a really moving, well written piece. I particularly liked what you said about sometimes (often) needing more than you can offer, because that’s something I struggle with in all my relationships and has often led to me isolating myself and/or indulging my more self-destructive tendencies when the guilt of feeling like a burden gets to be too much to handle.

    That being said, I’m beginning to feel frustrated with articles about depression that talk about lying in bed/not leaving the house for weeks at a time with no explanation of how that was financially feasible. I hope this doesn’t come off like I’m asking you directly how that was possible, because obviously that would be invasive and inappropriate. However, it is a general trend that I’ve noticed and it always confuses me. If I didn’t leave my house for even three days, it would be catastrophic. I would lose my jobs, be unable to eat, and eventually, get evicted.

    I’ve had severe depression in the past and when I was in college it would often take the form that you describe here: unable to coax my unbearably heavy body out of bed to go to class, to get something to eat, etc. Sometimes I would literally procrastinate going to the bathroom for hours on end because I couldn’t force myself to get up. But once I started working, this quickly became impossible. I was still just as miserable, just as bitter and angry at life for demanding things of me that I did not feel able to give, but I had to do it anyway. I had no choice.

    Maybe my depression has just never actually gotten to the point you describe here. Maybe I’m being ignorant and exasperating. I truly don’t know. But it is something that I’ve been thinking about for quite a while, and I just needed to get it off my chest. Thank you.

    • Hi Ivy,

      There’s never a bad question, and you asked in a very respectful way. I think there are two types of depressed people: functioning and non-functioning.

      In my darkest times, my depression wouldn’t even let me out of bed. Most mornings, I huddled in my sheets for hours, shaking, dry heaving, and covering my ears trying to block out the horrible things my mind was telling me about myself. Even if I did manage to go out somewhere, sometimes anxiety or depression would hit me, and I would need an escape, leading to canceling plans, leaving events early, and not being able to do the things I want.

      For days, I didn’t eat, could not bathe, shave, or do any other type of self-care, change my clothes, or do anything otherwise healthy or positive for myself. I was desperately lonely, hopeless, loathed my body, felt like I was a burden to others, had no benefit to society, and would never find happiness.

      This is how I describe non-functioning depression. I skipped doing all my coursework, didn’t go to class, was fired from my job, and quickly went through all savings I had simply to keep me afloat.

      There is a beautiful U2 line I could always really relate to:
      “Running to stand still”. That’s how depression felt.

      • Hey, I just wanted to say thank you for this response. I’m really sorry that it took me so long to reply. I did read your comment (though somehow missed the author’s reply) but I honestly felt a little ashamed of the lack of empathy that I displayed in my initial response.

        Since I wrote my original comment, my depression has come back with a force, and I’ve had many days similar though still less severe than the ones you describe above, where getting out of bed is a Herculean feat, where all I want to do is cry. I had honestly somehow managed to forget what that felt like. I wish no one had to experience that level of disgust with oneself; it’s one of the hardest things, personally, that I have ever gone through. I’m really sorry that my initial response was so lacking in empathy. Thank you for taking the time to patiently explain the distinction between functioning and non-functioning depression to me; it really helped me to understand what other people are going through, and even now reminds me to be as gentle with myself as a I can be while I drift towards the non-functioning end of the spectrum.

    • This is real! Depression ended my career for exactly the reason you described – I couldn’t just take 3 weeks off work. I had to resign, leave my house, and live with my dad for a while until I got better (what would have happened if I didn’t have that privilege? I would have been homeless, I guess, unless I crashed on friends’ couches for months or something).

      I lost my last job because of it too for the same reason. Luckily at the time I had enough savings that I was able to survive until I got better and got another job. I was also luckily still able to do sex work so I got a little money doing that. I was about to move back home again though if that didn’t work out.

      All of this makes what I’m describing in the piece even more important, though. A couple years ago, I housed a depressed/broke/unable to work friend for months and paid their rent back when I had a career and a salary, because I was able to, and cared about them. If I hadn’t done that, I don’t know where or how they would have lived. I’ve housed multiple people on couches when I’ve had them. I’ve bought friends food and cooked for them and donated clothes when I had them to give. All of this is movement work, in my opinion. All of this is doing what I can when I can and when I have the resources to.

      I want a community where people who have access to resources share them when they can, and hopefully the favor is returned when they are on the needy side. I don’t think we can rely on the state to take care of us.

      I don’t have an answer for you. Capitalism is hard. I only survived my darkest moments because of the community care of my comrades. Some of my comrades only survived their darkest moments because of the community care I provided them. I think this is the only way we’re all going to survive.

      • I’m just seeing this reply now, so please forgive me for the late response. I think you’re absolutely right that taking care of people is important work. Your friends are lucky to have you.

        I want to thank you for responding to my comment in an honest and patient way, but recent events in my life have led me to believe I was being a little bit callous and narrow-minded when I wrote it, so I apologize for that. I’ve struggled to get out of bed lately. A lot. If I wasn’t in a relationship that means the world to me and that I’d do anything to preserve, I’d probably consider moving back in with my parents right now. This is all just to say that I think I understand the state of mind you’re describing above a little better now, and I’m sorry for not being more empathetic when I was in a better place myself. Thank you.

  19. Word. People in my community mostly acknowledge things like MCS and make sure accessibility information is front and center with any events or whatever that are going on. I don’t wear perfume for this reason too, just in case anyone I know is sensitive to it. But education around that stuff is really lacking for a lot of folks. :(

  20. This is one of those articles that really get to the heart of a problem. It’s a new and important way of really helping. I appreciate your honesty and courage. I too confess to always trying to be strong; it has not always worked. It’s great to remove the guilt from asking for help. Thank you for starting a dialogue.

  21. This is beautiful and lovely. Thank you for this much-needed reminder that true self-care is possible only within a network of support.

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