It’s one in the morning on New Year’s Day. I’m alone in my room savoring the last taste of mini-chocolate donuts before my medicine kicks in. Once it does, I get so nauseous that all I can do is lay still and hope that I can sleep.
When the clock hit midnight, I was lying in bed watching a documentary about obese people on my computer.
The only “Happy New Year” wishes I got were two texts. One was from a wrong number. The other was from one of my friends that I’m in the process of losing touch with; I suspect it was a mass message to everyone in her phone.
My mom and sister were downstairs, but they made no effort to come see me. I’d snapped at them earlier, so they left me alone. My boyfriend didn’t say anything either. I haven’t heard from him since seven, when he said he was sorry for not coming over because he was tired and in a meh mood. I’m guessing he fell asleep.
I’ve spent most of that time crying on and off.
You see, the problem is that I’ve spent the last three days with a pain in my left side, and while it fades in and out, it’s been getting worse. Normally this wouldn’t bother me too much, but in the last three weeks I’ve been in and out of doctors’ offices. I started off with a Urinary Tract Infection (my third since May), and after being off of those antibiotics for a day, I developed an ear infection. While I had my ear infection, my allergies ran amok, and I had to get a special nose spray to allow some sinus tube to open back up. I just finished the antibiotics for the ear infection yesterday morning.
All of this would be overwhelming enough by itself, but this happened after almost an entire year when I didn’t go one week without something happening to make me stop what I’m doing and curl up on the couch and wait for it to go away.
All of this has happened because I have fibromyalgia.
I’d explain what fibromyalgia is to you, but I don’t even know myself – my doctors don’t either. They THINK it’s nerves over-reacting and sending out false pain signals. But if that were all there was, it wouldn’t be associated with so many other things. If you stop by any fibromyalgia website, you can click on a page and find a long list of associated diseases and ailments. All of them aren’t even listed.
As if the pain and stiffness weren’t enough, now I have Irritable Bowel Syndrome, chronic fatigue and insomnia, sensitivity to temperature and certain chemical smells, loss of concentration, and worse, anxiety. I hope that my reproductive organs function properly, because I want children one day (Even though I already know this might not be true. I’ve had one cyst and irregular periods so my doctor threw me on birth control a few years ago and that was that.)
So I have my pill cocktails for this thing and that thing, and I have patterns I need to follow or else something will flare up. There’s an even bigger problem with all of these things: I’m nineteen.
I was diagnosed with fibromyalgia at sixteen, and for a while it looked like it was being managed by medication. I was able to function and go to school and go out with friends. It would flare up every now again around my periods and during the winter, but it was still manageable…until January of this past year.
My doctor decided to switch me to a new drug for fibromyalgia. This drug was hardcore. It came in a trial in this little book container. I had to ease into it because it carried some potentially harsh side effects. It was hell from the beginning. I was nauseous from the second pill, but my mom and I decided to give it a chance.
By the middle of the trial, I was so nauseous and weak that it put my new part-time job into jeopardy. I sat through the orientation trying not to throw up. When I started having heart palpitations to the point where my heart stopped beating long enough for me to panic, we decided to take me off of the drug, but of course, I had to taper down because there was a chance of seizures from suddenly stopping.
Ever since, the problems haven’t stopped. I’m more than a semester behind in college because I’ve had to drop classes. This next semester, I will try for the third time to finish Composition 2 and Intro. to Sociology, and at this point, I’m not sure if I will be able to do it on this try.
I did online classes last semester, and this semester was supposed to be my attempt at real classes again. My anxiety has been right below the surface for weeks. I keep thinking, “If I can’t even make it more than a few days without something happening, how can I make it through classes? How can I live a normal life and have a job when I can barely function for more than a few days?”
I’m very aware of how much my parents spend on my doctor’s appointments and medications – it isn’t a small sum. My mom’s stack of doctor’s bills and reports is easily over six inches. I know my insurance runs out when I hit twenty-five, so I know I have a time limit to finish school and find a job, but I’m going to school to be a high-school English teacher. My starting salary will be somewhere in the mid thirty thousand dollar range.
I don’t want to have to admit that I will have to rely on someone to help take care of me, but honestly, on a teacher’s salary, I will be stuck at home until I pay off all of my student debts or I move in with a boyfriend. I refuse to live with friends because I don’t want them to have to take care of me when I get bad. I don’t want them to have to bring me things when I can’t get up. I don’t want them to have to sit with me when I’m curled up in bed sobbing because I don’t want to be sick anymore.
All I can do is hope that it will go back into remission or I can find a way to manage it because I don’t know how I can ever have a normal life with it as it is. I always have the fear that people are going to leave me because I’m such a mess. I tell my boyfriend that I’m a mess; that I’m falling apart, and he tries to reassure me that the rest of me makes up for it.
It angers me when people don’t take my illness seriously. My sister laughs at me if I tell her why I’m feeling bad. I’ve had people tell me it was all in my head or look suspiciously at me when I can’t give them an adequate explanation of fibromyalgia.
I know I don’t look sick, but I like it that way. If I looked sick every time I felt bad, I’d always look awful. I get mad when I see all this research money being thrown at all these other manageable diseases or anti-ageing products when fibromyalgia has the potential to systematically destroy people’s lives. It doesn’t matter that it’s not deadly: if a disease has a potential to confine you to bed, it deserves funding.
My plans for my future are very tentative. Even if I’m only planning a week in advance, I have to add “I think” to the end of it because I have no idea if I’ll be up to it. I’m sick of having to add “I think” to all of my plans.
I want to have a job. I want to go to school full-time. I to live on my own. I want all of the things people my age complain about. I want these things because they’re normal. I want to know that I can be normal. It hurts to hear people complain about this stuff – I want so badly to do it all.
My political views are becoming more liberal. I’m okay with universal healthcare when we can afford it. I need it. I’d gladly pay extra taxes if it means I don’t have to pay for outrageous doctor bills or ridiculously expensive mediation because I react badly to certain generics.
I support abortion because if I were to accidentally get pregnant, I’d have to choose whether to put my body through excruciating hell and lose all functionality for nine months, or abort. I’m not even fond of the idea of abortion, but I still want that option.
I recently started supporting medical marijuana because my body is being worn down by pain medications. I get upset when people try to oppose me on that one. My favorite argument is that America doesn’t need more high people because people with chronic pain are already high all the time. People in chronic pain take pain pills to function, not to relax. (Also, the people who actually would need medical marijuana hate the people who want to abuse it just as much as you do.) I’d gladly eat a pot brownie instead of taking a pain pill that’ll leave me nauseous and weak for six hours and for half a day afterward because my body is already worn down.
Do I need to repeat that I’m only nineteen?
And all I can do is just sit, wait, swallow some pills, try to exercise when my body lets me, try to eat healthy when my stomach lets me, and hope that I can get everything into a manageable state.
I’m starting to feel it’s too much to hope for it to just go away.
Because of my lovely picture (which is in constant need of maintenance), I cannot talk to many people about the constant weight on my shoulders. This situation is not helped by the recent loss of the two closest friendships I have, which happened as these things do, with only small amounts of shared blame.
I’ve been limping along for a while now, managing occasionally to feel like life is worthwhile and these wonderful times of hope are mostly because of my wonderful husband, the one person in the world that I am not afraid to cry with, the one person I know will not think less of me, or dismiss my pain.
This wonderful husband just got a short-term contract (four months) in a city six hours from here. It is a wonderful opportunity for him, one which I happily encouraged him to take, but I cannot go with him for various reasons.
During the day this seems like something I can manage; after all, he’ll still be here on the weekends, and it’s only for a little while.
But at night, the darkness invades my heart, and I cling tightly to him, terrified by the thought of being apart from him for even one night. Because along with being my best friend and soul mate, he is frequently my salvation.
It is because of him that I have not dropped out of grad school under the overwhelming apathy that threatens to prevent me from finishing assignments.
It is because of him that I can sort through my often tangled feelings and come out the other end feeling like I might be okay.
It is with him, and only him, that I can say that haunting word “depression” and not feel like I have to have a treatment plan all mapped out for his perusal.
Five days a week without him is five mornings I have to get out of bed and go to class. It’s 80 waking hours that I cannot debrief in his arms. It’s five evenings of dread, knowing what’s coming when I get too tired to fight it off, and it’s five nights of hugging my pillow, praying sleep will come before the melancholy attacks.
I alternate between believing both that “my parents gave me everything; I had a happy childhood; I don’t have any reason to be this messed up,” and “my parents emotionally neglected me; I had an awful childhood; no wonder I am this messed up.“
I fantasize about being in the hospital because that seems like the ultimate (and only) way that people might finally see me and care about me. Logically, I know that it’s not true, but my emotional brain is convinced that being sick or hurt is the way to get the love, attention, and care that is not present in my daily life.
I am ashamed.
I’m a 22-year old who is still desperately attached to my mangled childhood stuffed animal, Lambie.
I surreptitiously, but uncontrollably, pull out my own hair. I know have trichotillomania (and dermotillomania while we’re at it), but it’s one of my most shameful “secrets.”
I am pained getting out of bed in the morning. It’s hard to relate to people who casually say, “Yeah, I didn’t want to get up this morning,” but may not understand the gravity of depression. It hurts to the bone.
I have trouble taking my daily antidepressants because a hidden part of me doesn’t believe I’m worthy of feeling better.
I am obsessed with filling my brain with as much information about mental illness as possible.
And yet, no matter how much I read books, articles, and studies about eating disorders, depression, eating disorders, anxiety, or impulse-control disorders, I struggle to control my own mental health.
I have a hard time with “I’m depressed.” Maybe because I don’t believe that the real me is just buried under mental illness. It’s more like “I’m a person living with depression.” It has taken so much of my personality and soul out of me, but without depression, I am a lively, joyful girl.
I am taking care of myself (or I’m learning to).
I practically begged my parents to see a therapist, nutritionist, and psychiatrist, when I was only 15 years old. It certainly wasn’t easy, especially because we didn’t talk about anything “emotionally charged,” but I knew that it was a step I had to take in order to alleviate my pain.
I reach out to others when I need it most. Even though I isolate, too, I also know that in moments of desperation, I do instinctively ask for help and support from those I trust.
I treat myself to occasional manicures, special purchases (a dress, a pillow, some art supplies), and a lazy Sunday.
As much as my brain tries to trick me into thinking that I am worthless and unlovable, I try to actively do things for myself that remind myself that I deserve care.
I am brave.
I share my story with very few people, but when I do, it is the most rewarding experience. Sharing real experiences and thoughts is how I create deep connections with people.
I moved to Denmark for my first job out of college. I don’t speak the language, I’ve never been away from home for more than four months, and I left my entire support network at home.
I am working full-force in therapy at facing the demons and insecurities I have hidden for years. I am taking charge of my life by learning to be vulnerable, accept my flaws, and love myself in spite of them, and find happiness for the first time in my life.
Or, at least, I think I am. I’d like to think I am. I think about writing all the time – and then I feel ashamed of myself because I’m not writing. I think about all of the stories I could be writing – I think about the text file of ideas for stories on my desktop – and then I get even more depressed because I’m not writing.
The great thing is that I’m not writing because I’m depressed, because I have no job, no friends, am 1300 miles away from all support systems, except for my wonderful soon-to-be husband, and I spend most of my time in an insecure, anxious ball feeling sorry for myself.
I keep seeing over and over again, on Twitter and Facebook and in my MFA program’s forum this statement: “if you don’t write, you aren’t a writer, and you probably shouldn’t be. To be a writer, you must need to write like it’s the way you breathe.” So I second-guess myself; I don’t need that. But I need to need that, if that makes sense.
I miss the feeling of excitement when I pull off a great scene. I miss feeling proud of myself. I miss the sense of self-esteem writing gives me. But right now, depression is taking it away.
I just don’t know how to push through the overwhelming apathy and shame to start writing again. And everyone who tells me to shit or get off the pot – to just start writing regardless – really isn’t helping.
I’m Tired I’m tired of acquiring but never keeping nice things; possessions I work arduously for that are torn up, soiled or otherwise destroyed. I’m tired of endless piles of laundry, clothes strewn across the floor, indistinguishable as clean or dirty, but washed again nonetheless. I’m tired of chaos, of the arguing, of the drama and constant conflict that ages my soul. I’m tired of being shown how for granted I’m being taken. I’m tired of never knowing if I’m coming or going. I’m tired of feeling responsible for the complete care of everyone else and sacrificing my own care of self. I’m tired of feeling chronically exhausted. I’m tired of my complaints and concerns being pushed aside, minimalized and marginalized. I’m tiring of knowing “things could always be worse” as a means to not being able to be entitled to my emotional journey. I’m tired of listening to others during their times of deepest sorrow, frustration or fear and being a pillar of strength for them but rarely being given my own time to grieve. I’m tired of being told I’m hormonal. I’m tired of having my emotions rationalized for me. I’m tired of being expected to “deal with it” and accept that “it’s just part of being a parent” or “being an adult”. I’m tired of feeling like I cannot still express my inner child, have big dreams and be encouraged to chase them. I’m tired of adults bullying other adults. I’m tired of divisiveness and actions that only perpetuate further trauma and abuse. I’m tired of being an angry white female. I’m tired of feeling threatened by PRIVILEGED WHITE MEN I’m tired of fearing for my own safety, bodily autonomy and well-being EVERY DAY. I’m tired of, when expressing my concerns and frustrations, being called names like snowflake, FEMINAZI, bitch and CUNT. I’m tired of working myself until I’m literally ill and yet still feeling immense guilt for purchasing that $19 shirt at Target. I’m tired of the pressure to be the perfect mother, the perfect wife, the perfect daughter/sister/nurse. I’m tired of attachment titles. I’m tired of being expected to take a side when my beliefs lie somewhere in the middle. I’m tired of women having no safe place to candidly talk and share without fear of persecution, name calling or mean-spiritedness. I’m tired of male violence against women. I’m tired of watching so many of my fellow brothers and sisters continue to live lives full of anger, resentment and self-entitlement, oblivious to their own inner demons. I’m tired of Dr. Google. I will always side with evidence backed scientific studies. I’m tired of watching parents put their children at risk for a lifetime of illness because of a handful of conspiracy theorists. I’m tired of trying to explain facts to those same people and them finding a means to justify EVERY SINGLE TIME. So, I’m tired of selective ignorance where there is a literal WORLD of information at mere fingertips. I’m tired of reckless, self-serving decisions of others that may adversely affect countless people. I’m tired of online battles, egocentric conversations and people’s inability to say “I’m sorry” or “I was mistaken”. I’m tired of being oppressed because of my gender. I’m tired of being objectified because of my outward appearance. I’m tired of consistently having to maintain a stern exterior to protect my children and myself from pervasive predators. I’m tired of mean, bitter people. I’m tired of always being strong. I’m tired of being responsible for everyone’s emotions, blatantly disregarding my own. I’m tired of letting things roll off my back all the while knowing they will puncture me on the way down. I’m tired of pretending I’m always unbreakable. I’m tired of violence, both via the media and in the world. I’m tired of endless wars, of which neither party will ultimately win. I’m tired of our elected officials, having taken oaths to serve citizens and country, acting like nothing more than selfish, insecure middle school children. I’m tired of relentless mind games, fear mongering and empty threats. I’m tired of being tired. I’m tired of taking on all of this weight. I’m tired of being accused of attacking others when I can no longer keep it all in and finally break down and speak my mind. I’m tired of the fragile male ego and the need of constant reassurance. I’m tired of watching women lessen themselves to help a man feel significant. I’m tired of toxic masculinity. I’m tired of men trying to justify their bad behavior as “urges” or “needs” or the old adage “boys will be boys”. I’m tired of watching the world in its current state; its destroyers in utter denial. I’m tired of ALL THE GREED- It has caused abuse, war, human mutilation and countless children’s deaths. I’m tired of society’s RIDICULOUS expectations of the ideal female form. I’m tired of fake tits, tight asses and flat tummies. I’m tired of men expecting “perfection” in a woman while they fill their ever expanding waistlines with chicken wings and beer. I’m tired of the ass-patters, the at-a-boy-ers. I’m tired of seeing blame shifting, scapegoating and flat out lying all in pathetic attempts to save face and avoid accountability. I’m tired of feeling stretched far too thin, always dancing on the edge, but never actually jumping. I’m tired of cooking countless dinners, only to have them picked at by children. I’m tired of washing dishes with tears of frustration in my weary eyes because the dinner I made and threw out was the last of the food budget. I’m tired of pretending to be OKAY. I’m tired of never being allowed to own my feelings. I’m tired of sharing and being condemned for doing so. I’m tired of hard swallows and “I’m fines” through gritted teeth and clenched fists; anxiety attacks in the bathroom between motherly duties. I’m tired of pushing through my own emotions inappropriately in order to quickly address the needs of others. I’m tired of finger pointing; defensive, argumentative conversations. I’m tired of waiting for inevitable civil war, feeling riddled with anxious anticipation EVERY DAY. I’m tired of the pandemic that is disrespect, both for others and self. I’m tired of trying to fix everything. I’m tired, I’m tired. I’m tired… I think it’s time I rest.
I originally wrote this for my blog this past September and it remains one of my favorite writings to date. Thanks for reading!