Working out is super hard under the best conditions, but especially hard when you are a chronic pain patient. Over the last year and a half, I went from being bed-ridden to being functional on most days again. I work out probably 5-6 times a week (unless I’m injured) and I’m continuing to reach a healthy weight. If your goal is to lose weight, I can’t help you. The reason I can’t help you is because MY goal was to create a sustainable lifestyle so I could be healthier again. Research will tell you that exercise doesn’t matter for weight loss, and maybe that’s true but I know for a fact that it matters if you want to be healthier. So please don’t expect that I can tell you what to do about the number on the scale. That number might be perfectly fine and healthy for you, it might be too high, it might be too low. I don’t know. But what I do know is that I wanted to be able to dance again.
Now, up front, there are some basic barriers to this that the social justice community needs to take up as part of our list of causes. A lot of my success has depended on access. I’m able to exercise BECAUSE my pain is better managed and my pain is better managed because I can exercise. My pain is better managed because I now have access to medical marijuana and acupuncture and supplements. For people living with chronic pain in poverty, this challenge is a lot harder. Medi-Cal covers acupuncture but most doctors won’t take it, medical marijuana isn’t covered by insurance and that access depends on where you live. Supplements aren’t covered, though Vicodin and the like are. The most likely outcome as a chronic pain patient with Medi-cal is that they will shove prescriptions at you and hope for the best, because that’s what the government covers. Yet another reason we need universal health care, especially as research is currently implicating the exact drugs chronic pain patients are on as part of the health crisis among poor whites. So before we start lecturing anyone about how I did it so they can too, you can put some hours into fighting income inequality and poverty.
With that said, there are some pretty practical things that can help a lot of people that took me a while to figure out on my own, so I’m imparting that knowledge.
- Go slow
The goal isn’t to do CrossFit tomorrow (OR EVER! WHY GOD WHY!), the goal is to be more functional and in less pain. The best way to start is to start out small. I started with short walks before they became long walks which then became yoga, which then became dance. 5 minutes became 15, 20 became an hour. OVER SEVERAL MONTHS. Especially with Ehlers Danlos Syndrome, the goal is to avoid injury because injury sets us back and also makes us want to avoid exercise in the future. Injury in Ehlers Danlos is also permanent, so it’s NEVER worth whatever the push was for. Stop when it stops feeling good.
- Have fun
A lot of chronic pain patients develop justifiable fears of movement because they exacerbate their conditions. We’ve developed negative associations with exercise because of past injury or poor pain management. The goal is to find things that you can develop positive associations with so that your brain and body start to associate exercise with a positive experience. For me, this means that I also had to think around social anxiety too. So planning around this, I knew I didn’t want to do competitive activities that involve a lot of social interaction. So I started doing yoga based on youtube and books, and walking. I love to dance, so when I was able, I started incorporating that too. After some time, I developed such positive associations that I kind of hate when I don’t get to work out. Coming from someone who grew up in a family that mocked me for yoga, this is a huge improvement.
- Please for the love of God don’t push yourself to work out when you are ill
Pain is your body’s way of saying something is wrong, other people will encourage you to push past this. These people do not live with chronic pain and aren’t fragile and likely to be injured. These people should not be giving sick people advice. The goal is to be able to do more over the long term. It’s not a race and you don’t win by being injured.
- Listen to your body
One of the degrees you get as a chronic pain patient trying to exist is in ignoring your body. “The pain is always there so I just ignore it.” “I can’t work if I don’t ignore the pain.” Even perfectly healthy people do this because we live under an industrial system that is frankly quite brutal. But your body is pretty smart and it does know what it needs if you learn to hear from it. Doctors gaslight us into not listening to our own bodies or health needs but this is a HUGE mistake if you want things to get better. You have to plan exercise around what works for you. On days when my shoulder hurts, I need to walk instead of doing yoga or I need to do a different form of yoga. I spent a lot of time also meditating and working on my anxiety so that I could listen to my body again, and because I spent that time I was able to create a system that worked without injuring myself.
- Routine is your friend
This one is really hard because sick people never get sick on a routine schedule and because some of us (me!) didn’t grow up in a house with a whole lot of routines. This isn’t about always doing the workout or doing the workout at the same time every day or to the same level of difficulty. It’s about knowing that it’s better to do a little bit more often than to do big long workouts that tire you out. It’s about self-care routines like baths (hot water therapy is my best friend in the whole world, besides Epsom salt, but they are in a committed relationship with each other). You have to make exercise a sustainable life-long habit for it to work, so don’t try to show up to 90 minute fitness classes with perfectly healthy people if that doesn’t work for you. I don’t dance in a studio. I dance like I’m from North Highlands in my bathroom. But I do these things most of the time as part of my routine.
- Your mental health matters too!
You know what makes it super hard to work out? Anxiety. SO HARD. So I had to actively start treating my anxiety. Depression makes it hard too. So does a whole host of conditions that can be brought on just from being in pain all the time. Again, this is something that we need to improve access to, so before you go around telling people to “get over it” I’m going to ask that you put some hours into expanding mental health treatment access. Your environment also matters a lot! We think we can just “power” through whatever, but we can’t. You have to reduce stress in your life to deal with the health issues and environmental factors make all the difference, so again, let’s work on poverty. But assuming you have some resources, I would encourage you to take up meditation and get your mental health issues treated like the real condition they are, because they will inhibit your ability to exercise and make routines. I don’t have a medical degree, so I don’t know that they would work for everyone, but there are free meditation apps like Brainwaves that I’m having a lot of success with for anxiety. Some mental health problems are also nutritional, I’m taking a B12 supplement (I have deficiencies both from my body being weird and my childhood) that has helped both my anxiety and energy levels. Some feelings come from having just experienced a lot of terrible stuff, in which case, there are a lot of promising treatments for most forms of PTSD. I’m not saying that things will be perfect. I still have lots of bad nightmares and flashbacks and all sorts of fun stuff but the goal here isn’t to be perfect, it’s to be happier and healthier.
- Get a new doctor if yours isn’t helping
This is harder because there are real access issues here, but if your doctor isn’t giving you the resources to improve, or doesn’t take you seriously, get a new doctor. It’s not conducive to you healing to have a doctor that gaslights you and a doctor that believes in you and works with you to achieve YOUR goals is going to make a huge difference down the line. Seriously, this is what they are paid to do, to heal you. Fire them if they aren’t working on that. And not to be too biased, but until male doctors step their game up, I’m going to say that I’ve had A LOT more success with female doctors at the helm. They’ve been more likely to treat me with compassion and respect and like an equal partner in the process. YOU DESERVE THAT, SO DEMAND THAT. If your doctor makes you uncomfortable, report them too. Just because they went to school for a long time doesn’t give them all mighty god powers. They are human beings, and while I suggest that you find a doctor that you feel you can trust to not micro-manage (I do whatever my doctor tells me now because she has already been successful, so I don’t question her except for clarification), I also will very loudly encourage women to self-advocate in the medical office. Every experience with your doctor shouldn’t be stressful hell. Stressful hells are not conducive to healing.
Bottom line here is that exercise is part of self-love and we are all learning that concept again after a lifetime of being trained to treat ourselves cruelly for the sake of production. So I’ll end with this reminder: you are a human being. This is beautiful. This is more than enough.
“We might be mutually co-dependent”
“I believe we call that socialism.”
I spent a lot of time this weekend at a wedding mostly hanging out with powerful, smart accomplished women who spend a lot of their time caring for powerful, smart, accomplished dudes. Whether its remembering the sunscreen or ensuring promptness, these dudes, all of whom hold white-collar jobs and are successful members of society relied deeply on the women in their lives to make them functional. In the case of my husband, and I, this dependence runs two ways. Together we make one fully functioning adult. For any of my girlfriends in a healthy relationship, this is true for them as well.
I’m told this is supposed to be problematic for a feminist but I sort of think the whole “complete independence” thing is a lie we tell ourselves to justify a system that is exploiting our labor. No one lives in a vacuum. In a million ways we rely on each other, and in working class communities, we know this well. The jerk is the one who doesn’t get to borrow eggs for breakfast to feed their kids. At no point in my life have I ever felt I didn’t owe my position to the hard work of a lot of other people, even though my relationship with my family is horrible. There was still my friend’s mom driving me to the SATs and teachers teaching, and a whole alternative community around me that has supported me over the years. So I’m not really bothered by the idea that we are mutually co-dependent on each other, I think it’s what brings communities together and I think the idea that we can do it all alone is a sham.
This mythology really doesn’t serve to benefit anyone, except to provide an excuse as to why we don’t provide social services when people are in need. The feminists who promote this ideology are coming from a good place. Working class women know too well what a death trap marriage can literally be if you marry the wrong man, but there isn’t a working class woman alive who hasn’t relied on her other (mostly) female community members. We’ve made it such that women have come to feel guilty about needing help or asking for help, which is contrary to our very nature as a species.
The only human lone wolf story that is ever real is the one in which the wolf is dead at the end. The entirety of human civilization, indeed every advancement ever made, has relied on our ability to cooperate. Our entire species relies on the unique labor that women have historically provided to their families and communities and yet we act as though those who continue to provide that labor are somehow intellectually or morally inferior to the women who employ them. That’s not feminism, that’s just classism.
And it’s not good for upper class women either! So many of my higher income friends are struggling with issues that would normally be solved by a community of women around them. They are alone. Disconnected. Stressed. Burned out. Some of us do this for a period of time, but all of us end up crashing and burning at the end because it’s not sustainable to act as though we exist without the help of others.
So yes, I am dependent on my husband. And my friends. And my family. My husband is also dependent on me, and his friends and his family. We co-operate in a mutually beneficial way that allows us the freedom to be our best selves. We always know we will have help in our goals and are therefore free to take more risks. We take actions to support each other because the success of one partner is good for the others. This is the basis for strong relationships in general, even if marriage isn’t your thing. So it is fine if you work really hard and still need to call your mom for help. And its fine if your friends fill that role. And its fine if it’s your immediate family too. The point is that no one should be alone or feel alone, and that community is essential for our survival.
The idea that we have to “do it all” has not been used to liberate us, it has been used to keep us in a trap where we constantly run on a hamster wheel trying to achieve unattainable things. It confines us, restricts us, and divides women into camps that have no reason to exist. There’s always been working mothers and they are great, and stay at home moms are too, and we need childless women too, and shouldn’t we just let people do what fulfills them and makes them happy? They’ve covered up the bare reality for most women that don’t feel like they have much of a choice. Many stay at home moms are mom’s that realized that to work and get childcare, she’d have to give up her whole paycheck AND miss out on raising her kid. Many working moms are supporting their families wholly and don’t have the choice to stay at home. We’ve constrained all of these women and then told them it’s their fault if they fail to measure up. That’s not love, that’s not liberation.
Real love is liberation.
It has taken months for me to figure out how to write this post. At first I ran away from it, avoiding it, burying it, rejecting it. Then I spent a long time trying to find a way to wrap it in a pretty bow and make it nice. It was always there in the background haunting everything I did. Eventually I couldn’t hide anymore and I decided that I just had to be honest and raw. That’s something I’ve lost in the last few years as I have adjusted to this new environment. I used to scare people like a monster with my mouth and the things that came out of it. So I learned to codeswitch and say it with a smile. But it wasn’t enough, my edgy-ness, my having-lived-life-ness was unprofessional and it was no longer socially acceptable for me to say what I thought. I began to see myself as something that I had to hide and when I couldn’t hide it, I hid from everyone.
So here it is. As honest as I can say it.
When I was a child I would walk through my house and get hit and ask why and the sociopath I pretended to be my father would tell me it was just for gp, general purpose. I got accustomed to it, it was actually one of the less terrible pieces of my existence. Being hit, I could deal with that. I could deal with the insults causally said to me in the house, slut, fat, bitch, whore. The best part of my years were my trips to my grandmother’s house where at least we’d have enough to eat, and instead of the beatings I just got called fat. These were the easiest parts of my existence, so when people ask me why I was successful in school, I don’t know how to tell them that school, with all its ridiculousness, with the lack of books and the food and the never fitting in, was the thing I fantasized about, because at school, I was undeniable.
My mom used to hide my test scores from my siblings to spare them the comparisons. I was the family scapegoat. When I asked her why she was so hard on me in particular she said it was because I could handle it and because she didn’t want me making the same mistakes. This is why my mother never felt the compulsion to tell me that there was anything I did well, she was afraid that if I knew my power that I would be an uncontrollable nightmare. When the sociopath went to jail I was 14, the beatings and the names didn’t stop, though the attempted rapes did and for that I felt blessed. I took the blows and the words from my sister and my grandmother because I knew that it was the only way for them to express their anguish. I’ve had people tell me that they were cruel to me because I was only one who could take it, a lot. That’s why by the time college rolled around, I could survive any critique. And I could also survive that treatment from the people who called me their girlfriend. I survived it by making myself numb, so numb, in fact, that I don’t really remember my childhood and now don’t even know when I dislocate my jaw or hip.
I was weird for a Stanford student in many ways, but the one that seemed to interest people the most was that I was not an outcast in high school. I wasn’t universally loved, either. When I was 14 a group of girls decided that they were frustrated with my popularity and confidence and they shouted whore at me in the hallways and wrote me letters in which they told me how terrible I was. They threatened to beat me up shortly after I had finally escaped someone that had been beating me for the fun of it. I wish I could tell you that the adults intervened but in my neighborhood the only real adults were the more competent kids. So as my now former friends attempted to dethrone me, the black girls at my high school came to my defense and said “if you touch her, then you deal with us.” I was surprised to say the least. I was used to using that line to defend people, just 2 weeks before the mean girl shenanigans started I had a guy beat up for sexually assaulting one of the girls that now threatened me. For six months, this torment continued but it ended up just back-firing and making me more powerful, mostly because they were never able to get me to admit that they had hurt me. Instead I sent their letters back written with comments in impeccable satire. By sophomore year, I was undisputedly running things, and I was doing it from my home because my health forced me into independent study.
People at Stanford didn’t seem to have an explanation for my experience in high school. I never had the heart to explain everything to them and I don’t think they would have heard it if I did. My first boyfriend in college spent one night calling me a whore and telling me it was because I was the kind of girl who dated the kind of guys who beat him up. But I was not that girl, I had more power than any of the men at my school did. I had no way of translating that to anyone and it made people uncomfortable and so, once again, the people around me tore me down to make themselves feel better, and I let them because I was used to being the sacrifice. By the time I reached Stanford, I had no self-esteem. Unlike my peers, I had never had a point in my childhood where I was simply safe and loved. When I was an infant, my mother’s husband held a gun to my head and threatened to kill us all if my mom left him. No one was even at my birth except my teenaged mother and there are almost no pictures of me from my childhood because my grandmother was angry with me for being born. I never developed a basis of worth or a belief in myself. To this day, I only think of myself as having the right to exist if I am doing something for someone else, which is why it has been so hard for me to be ill. My fiancé has faced the uphill battle of teaching a stubborn, brilliant, and profoundly wounded creature to believe that she is a human.
My junior and senior year of college I dated a very confident and happy young man who was the picture of California’s finest. Behind closed doors, he hated it when I upstaged him. When we took classes together, I would spend the evenings afterwards trying to make him feel better about the fact that I was the stronger academic. In the logic class, I solved all of the proofs and he stole my solutions and was happy when a slight mistake in transcription of sentences, not the proofs-mistakes that I was making because my headaches were so severe-would cause him to get a higher grade. I met him after returning from China, an experience that had been painful for me. The people on the trip with me often made me feel excluded, the girls fed on my bodily insecurities and the most banal statements about my childhood disturbed them. I was drinking, heavily, 4 nights out of the week and waking up with tears streaming down my face. I was hurt by the first boy who understood where I came from and called me beautiful even as he fucked other girls to prove to me he could. When I got back from China, my little brother got his girlfriend pregnant while still a senior, and my 13 year old sister was raped. I hid these facts from everyone and so I found a boy who would take joy in my doing so and who hated me when I was most myself. My life only continued to spiral out of control as time went on, and by the time I returned from my first summer in Germany, where I acted as my boyfriend’s house wife, my one positive female role model was dying and I knew that was not going to be able to finish my honors thesis. Instead of understanding that this happened because I was human, I took on all of the culture, exacerbated by all of the abuse, that said that if you didn’t do something it was because you didn’t work hard enough. “No excuses”, I learned, only applied to poor children. For me there is no safety-net, there is no gap year, no rehab and no help getting jobs. It made me constantly aware that despite all I had done, I was always one bad day away from hunger. My failure to write this thesis conveniently made my very insecure and very privileged boyfriend feel much better and he continued to feed the fuel by calling me lazy and picking on my weight with his friends the summer after I graduated in Germany. Of course, he got a lot of help from me when it came time for him to write his honor’s thesis.
Do you see the pattern yet? Do you see how I’ve been torn down by so many people who hated my fire? So many people and so many times, that people made sure I had no idea what I was capable of so that they could feel better about what they weren’t. But this isn’t just a personal story, because I am a woman in a world that does that. When men are sold something it is in order to make them feel and be great, and when women are sold something it is to cover up their inadequacies. Advertising is fundamentally an abusive boyfriend no matter what your background is. I feel the sting of irony as an exceptionally talented historian, who pointed out that Disneyland was bullshit at 4, succumbing to this. On the outside, I was the snarky bitch who smoked cigars while wearing a trench coat and short skirt and told people exactly who they were. On the inside, I was a profoundly damaged little girl who had no self worth. And I wish I could tell you that the turning point happened after breaking up with that boyfriend, and in some ways it did, and in the more surprising ways it didn’t.
When I broke up with him, I promised myself that I would never let anyone do that again and for a while the only way I knew how to prevent that was to become cold and untouchable, so I started letting the image of me as a sassy cat lady build. I put into place what I needed to be in the right relationship, but I hadn’t yet found the way to build a life that would allow me to be my best self. I entered Stanford’s Teacher Education Program (STEP) and suddenly found myself in a program that had a fundamentally core belief that required them to make me feel like shit about myself, because you see in education ideology, people who have an easy time performing do so because they are more confident and take away from the learning of others. It is why as a little girl, I had trained myself to count to ten before answering questions. It was why as a little girl, teachers would relish in my failure, and wouldn’t accommodate me when I was sick. It was why as a little girl, I would get perfect scores and be told it wasn’t enough. Very few teachers were supportive and kind to me in school, which is why my behavior was often atrocious.
STEP got on me early. They would refuse to call on me. Take me aside and tell me that I was hurting the other students. Call me domineering when my adult classmates handed over group assignments to me to finish for everyone. Refuse to give me any credit for any group assignments. Relish and then refuse to help me when I struggled. Pick on me and tell me I would never be good enough. My classmates would come to hate me and tell our supervisors that I was making it hard for them to do their best. They would report when I was sick and take pleasure in tearing my assignments apart. The few who stood up for me would find themselves shut-down. I became a complete nervous shadow of myself, and at precisely the same moment, my body hit its limit. STEP was merciless. It was everything that I was promised would stop when I entered Stanford and when I was an undergrad, Stanford lived up to that. Most professors seemed to love having me in the classroom and encouraged me to be successful. And I wish now, that I had been more open about my childhood and that I had had more support because if I had, I might not be as ill as I am now. Unlike my friends, I had no direction and no networks to figure out what to do with my Stanford degree. I have always been able in the classroom to hide my insecurity with my intelligence, so I never let on that I was confused. I could be ignored because I was white and helping me wouldn’t result in the same kind of public relations coup. I went into STEP because even though I desperately wanted to write and do research, I was dealing with too much and didn’t know that I was good enough to get a PhD. I thought that my failure to write my honors thesis meant that I was incapable because I unable to get past the 3 deaths that happened in the fall of my senior year, while also being forced to run the first-generation low income community group, First Gen Low Income Partnership. But I had no support, no community, no help because I was poor white trash. The only people I ever knew that had college degrees were teachers and everyone kept telling me that I needed to continue my activism for poor students. My boyfriend at the time encouraged me to teach because he was the “better” fit for PhDs. So I went into education.
Education is a female dominated field, and I thought because it was going to be a bunch of people who cared about children that we were all going to be super nice to each other. Which made the shock of reality even more difficult for me. This time it wasn’t one professor, it was a program. It wasn’t one group of girls, it was nearly everyone except those that had to work closest to me. I was ignored, ridiculed and then made to sit in meetings where I was told to apologize for the honor because I was making people feel bad with my presence and words. They took a very badly wounded soul and pushed me into the ground. I guess that’s how I ended up in work environments that replicated the pattern. That’s why I had to leave the classroom prematurely.
My body paid the price for this. It took the damage, quite literally. It took the damage when I was beaten and when I fought as a little girl. It took the damage as I struggled through Stanford, fighting the whole damn way for everything I got. It took the damage when I taught four classes, vomiting in between each one and then sat in class vomiting in secret every half an hour, because I was too afraid to let anyone know that I was sick. It took the damage when a very scared little boy injured me. It took the damage all year, as I struggled to climb up the stairs and into my classroom. It took the damage when I pulled a 14 hour day to prove that I was teaching the kids because some of the women on staff felt the need to tell my supervisor that I was bad at my job because I showed them up. It has taken the damage, being the only consistent protection I’ve ever had.
It has taken it everyday that I’ve hated it for not being thin enough. It has taken it everyday that I joked about how grateful I was to be smart because I was not beautiful. It took it when a boy told me to lose weight because I “could” look better. It took it when a boy told me his friends thought I wasn’t thin enough. It took it when I didn’t stand up for myself when a boy fucked another girl because I thought it was what I deserved. It took it every night I drank so that I could endure the social interactions with my peers who thought appropriate party chatter included bigotry. It took it when I rushed to class after my weekly toradol injection so that I didn’t have to deal with any emails from my supervisors at STEP about how I couldn’t possibly be sick because I could come to class and perform. It took it when I went to work limping only to have to spend vital work time responding to constant emails demanding to know why I wasn’t failing the students like everyone else on campus. It took it every single fucking time.
And what bothers me most, is that my story is not isolated. It is trapped in context. My story is the story of a gifted woman being torn down so as to not offend men. My story is the story of a kind, gentle soul being made rough by women who were scared to find out what her existence meant for them. My story is the story of a passionate, caring individual being isolated because the color of her skin didn’t fit into the narrative. My story is the story of a beautiful, womanly young girl hiding her body because she wanted to be taken seriously.
And I wonder how many gifted, kind, passionate, beautiful people we’ve ruined because we were scared of their power.