I hesitate to admit this, but it’s important. Before i got sick I was already pretending to be normal, pretending to be happy and productive and on some sort of trajectory, but I was just as lost as I am now. I have been dealing with severe anxiety disorders my entire life, ADHD, obsessive behaviors too numerous to list, occasional bouts of treatment resistant depression, insomnia, self-injury, severely restricted eating or binge eating depending on the year, as well as growing up with chronic pain to a much lesser degree than now in the form of frequent dislocations/subluxations, migraines, and dizziness/nausea, all of which went untreated for a long time, or treated but not correctly.
Now that I have a series of chronic illnesses/conditions, my mental health is under the microscope constantly. It has been enlightening but also terrifying. Not being able to hide my mental health or my physical health anymore is the part I’m still trying to accept. I’m used to being miserable to a degree and pushing through, always pushing through, and to have my body take that ability away from me has caused some serious grieving.
The thing I was most commended for other than my test scores was my ability to pretend like I wasn’t hurting while I was, both physically and mentally. All of the bits and pieces that make me my own person are also things that drew negative attention when I was younger, and I have trouble getting over that still.
My response to the negative attention, eventually, was to reinvent myself to be as normal as possible, as plain as possible, to not stand out too much, and to deny my artsy, nerdy, angsty side the freedom it wanted. Now I’m left with artsy, nerdy, angsty as things I need to learn to be proud of and to embrace again. I want to, I really do.
Those parts of me which long for the freedom to reinvent myself into the person I really am are winning. My hair is teal, my clothes are whatever the hell I feel like, I have been writing more honestly and openly, and I have picked up a paintbrush again.
So the path is there, I know what I need to do, but I’m scared to be myself again. For so long I’ve been this average-intelligence, straight, workaholic, brown-haired, plain-clothed girl who kept the ugliness and the oddness to herself, absolutely devoid of the desire to write the darkness inside of me or to paint it, only allowing thoughts out through a careful filter, and calling that happiness. It wasn’t. Neither was it sadness, exactly. I was just going in the wrong direction.
The reality is that my careful filter is broken now and only works in fits and starts… I can’t be anyone other than the person I have always been underneath the normal life I was trying to build around me like armor. I still love the interests I have cultivated while lost and wandering through life; I still love to garden, bake, and make my own home and beauty products. I absolutely still love my boyfriend, as well as this house and our cat. This is simply my soul wanting me to unleash it in any way possible in my new life, with my new limitations. I need to find a purpose, yes, but I also need to find myself again, be kind to myself instead of denying myself the freedom to be weird and potentially wonderful. So much anxiety must be tied up in the act of pretending not to be excited about the things that truly make me happy.
I don’t fully know what my happiness will look like now, but it will look different than the one I pretended was right for me.
To be honest, I’m relieved.
There are parts of me that are stronger than ever, and then obviously there are parts of me that are so weak that they have stolen life and time from me. But I am a survivor. This is me surviving. It might not be pretty, the struggle can get ugly and mean in an instant, but I have always survived, and I will continue to do my best. That will have to be enough.
I’m not any less okay than I was yesterday or the day before, I am simply not willing to pretend to be better or different than I feel. Some days I am still a suicidal teenager and some days I am a sage adult, and many days I bounce back and forth between the two. However, both are okay, both are me, and I am always going to be a survivor, even when I have no idea what else I am.
The term survivor implies that someone came through or currently resides in hell, however, and that is the part that people seem to forget. The struggle is what breaks you, but it is also what rebuilds you. We cannot be the same after we travel through nightmares turned reality.
Not the same, but certainly still me.
I am just too exhausted to draw a silver lining on my clouds today. Today it’s okay to acknowledge the storm overhead. To be soaked in it and shivering and afraid of the power behind it, but to remember that the sun also exists, just beyond those clouds.
So, I’m going to just say that things have been pretty bad for me right now. I have so damn many health care, financial, and emotional needs that are not being met, and after three and a half years of waiting my turn, I need something better than this, I need more, I need to live and have hope and at least try to get treatment for some of these problems. But just because I need something doesn’t mean it is possible. Money is an asshole that way. All ways, really.
I am still grieving the loss of a dear friend, and I talk to her at night when it’s quiet like this, and I think she hears me, but I don’t even know how to put into words how much it hurts to obliviously type her name on facebook like I’m going to see her there posting updates, and then to realize that no one gets to hear her sunny voice again. Who knows why it takes so long for the shock to wear off and the sadness that won’t lift to settle in. It’s like my bones are crying now, and I feel her absence physically.
All these things coupled with isolation and excessive pain levels with secondary depression, plus a nasty chest cold have made me a slightly more bitter girl, and I apologize for that, but then again, I kind of don’t want to apologize. Though it’s embarrassing to go off on an angry rant and publish it and re-read it the next day and not recognize who wrote the words, I did write it, and I did mean every word when I was writing and that tells me that someone else out there can maybe feel less alone if I continue to allow myself to occasionally write the lows, the times I don’t cope well, that my chronic illness brings.
The reason I’m suffering this week is simple. I went out, I lived a life for a week with two social calls an hour away from my house, and the consequence for my actions are a dire flare up and infections, even though I practiced preemptive rest, stayed hydrated, slept beforehand and loaded up on vitamins. That’s what the fuss is about, for any non-spoonies reading this. That’s why I’m “obsessed” with my illness and I never seem to win. You can do everything right and chronic illness is still a merciless, evil, cold hearted f*ck who will laugh at your plans, your support network, your therapy progress, your talents, and even your basic needs, and which will deny you access to them all from time to time.
I’m not trying to paint a grim picture, or a “poor me” kind of portrait, I’m trying to say that all spoonies, no matter how small you may see your contributions to be, all spoonies are important. You are important and you matter.
I guess I’m leaning towards the idea that if I don’t censor myself, I will probably help more people feel accepted and welcomed into the chronic illness community. We don’t have to have rainbows shooting out of our asses all the time to be valued and welcome members of the online spoonie community. I like encouraging people with stories about good days and things I am thankful for, and I won’t give that up, but I also don’t want to be missing a whole group of spoonies who feel pretty worthless and unaccepted by the rest of the chronic world.
Everyone needs a place to belong, even the undiagnosed, the doesn’t-quite-fit-the-diagnosis patients who are still in limbo, they need our support more than anyone. That is a stage in my journey where I was bitter every single day for at least a year.
So I’m going to perhaps post more vehement pieces than usual and not hold myself back. I will stop telling myself I can’t write on my worst days unless I have a good attitude while I do it,because that’s not therapeutic for me, for one thing. I do factor in here too, somewhere, I think.
The reality of being ill is that you will have some good days, some of us get more or less of those depending on our situation, some of us don’t have good days physically, but almost all spoonies eventually get to the point where you can have a series of bad days that you can handle emotionally, and those bad days will make you proud of yourself later on without too much soul searching involved. You endured and even conquered your illness for a while. You got through it without snapping and that’s to be commended. But it’s not to be expected from you. Positivity during hardship is not the only “right way” to cope. Because look what happens next; you overdo it or the weather changes or you cough funny, you have a medication reaction, or you develop a new symptom or allergy and things get complicated.
“Didn’t I just get through another hard week like this?” you think to yourself. It drags on, but you get through it, kind of numb and just making it day by day. And then not-so-wonderfully, another health setback; you have to take care of someone else who is ill, you get asked to another social function you can’t get out of, you have to attend three doctor’s appointments in one week, or whatever else it is, but it adds onto the pile you had not quite dug your way out of from last week yet. But you get through that week, and the next one too, though on the bad days you’re just counting the hours, you can’t even take it day by day things get so overwhelming. Months go by like this, a cycle of debilitation and not-quite-recovery only to be met with more medical problems, more stress, more debt, more isolation and eventually the bitterness that you thought maybe you had “gotten past” can sneak back up on you.
I’m not saying you are required by spoonie law or something ridiculous to feel all of these things in these specific ways for these reasons. I’m just setting the stage for those who are being hard on themselves for not coping as well as they’d like, and for people who may not understand what suffering from an invisible illness can be like when you aren’t improving.
No matter how you cope, or how well you “keep calm and carry on”, you still deserve to be commended. You’ve gone through a lot, and you should feel safe and understood when you are being honest about your pain. Honesty is not negativity.
Wishing everyone extra spoons, low pain days, and super soft fuzzy blankets that don’t hurt you while you’re sleeping. ❤
“Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young
The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.
If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy to be helpful whenever possible, but I don’t want ableist individuals thinking that my refusal to cry in a corner every day makes me somehow better at being sick than someone who can’t stop sobbing and wishing for death. I am not any better.
I am not “trying harder” than anyone else and I will not be used to shame someone who feels like they can’t handle their condition. I still feel like I can’t handle being chronically ill on a regular basis.
I am not your feel-good story. I am a deeply flawed human being with constant, unrelenting chronic pain and many other debilitating conditions and symptoms, too. My choices are give up and die, or keep trying to find a reason to wake up and to put food in my mouth once a day. Sometimes that is a genuine struggle. Sometimes I do not get out of bed, and I do not put food in my body, and that does not make me pathetic or weak, it makes me sick. I have good days and bad days and I have given myself permission to have both.
I am so very tired of inspiration porn, aimed at the general public and unapologetically using those who are physically disabled, suffer chronic pain, or live with mental illness and/or neurodivergence. Inspiration porn wants you to say “well, it could be worse, I could be that poor person in a wheelchair or that teenager with a cane, therefore I’m not allowed to feel shitty, ever.”
I am happy to answer any and all genuine questions about my life, my coping strategy, my illnesses, or anything else that someone is interested in, provided that the person asking is not just going to use my answers against me later. I am not interested in answering questions that are actually just thinly-veiled judgemental commentary on how I deal with my pain and other symptoms. I wish that my abled friends could just acknowledge that my reality is not something you can comprehend if you don’t live every second of every day in pain, knowing that the pain is life-long or progressive.
If you are not sick in a long-term sense, please try to understand why you cannot compare my life-altering, completely debilitating daily pain to the last time you had the flu, or the time you broke your arm, or even the car accident you were in, unless one of those things resulted in a long-term illness, disability, or chronic pain disorder. Flus, broken bones, and car accidents may be unpleasant, but after some healing your life resumed as planned, so you have no idea what it is like to live in my body, the body that has caused me to slowly, against my will, forget all my dreams and plans for the future. Please realize that every pain is experienced differently and is unique to each individual who is suffering. Comparison of one disabled person to another person, disabled or not, is never okay. We are not brave for the things healthy people think we are brave for. We are not brave for simply existing, we are not brave for going about our day as normally as we possibly can. Attitude does not differentiate a “good” cripple from a “bad” cripple. Inspiration porn is pure victim blaming, and society has unfortunately picked up this nasty habit.
Ableist propaganda would have us think that if we are not using our illness to transform ourselves into an inspiration, we are just wasting space and burdening those around us. Do not buy into that trash! I am sorry for each and every person who has ever felt like their pain or illness is the punchline to an ableist joke. Those of us who are ill are allowed to make jokes, we are allowed to seek out the humor in our situation, and it is despicable that people would use that coping mechanism against us. Yes, I use sarcasm to cope. Yes, I use humor to cope. No, that does not mean I’m cured or experiencing less pain or “getting better at dealing with it” as so many have said to me. It means that if I don’t laugh about this, it will crush me.
My medical decisions are not up for discussion unless you are another spoonie, and even then, I retain the freedom to completely ignore any and all medical advice that doesn’t come from my doctors. I even retain the right to ignore medical advice from doctors that does not make sense or goes against my beliefs.
I certainly won’t be basing my medical decisions off of an abled friend’s (ex-friend’s) suggestion because they feel like they have “observed my pain” (read: been annoyed by how much I talk about it) for long enough that they are unreasonably comfortable making sweeping declarations about my use of medication, or with stating that I “pity myself” (read: retreat from overwhelming and triggering situations so I can take care of myself appropriately) sometimes. Fuck yeah, I do pity myself sometimes. I refuse to apologize for that.
The abled seem to possess an unlimited capacity to confuse my online and in-person honesty and unwillingness to sugar-coat reality with what they view as pity-seeking behavior and weakness. Saying I have an incurable illness is not pitying myself, it is the truth. I am allowed to speak the truth, my truth, and I am allowed to remark at the depressing reality of chronic pain. Ableism makes accepting the reality of our illness that much more difficult. If I said I never have moments of self-pity I would be lying, and that helps no one. I have every right to be upset about my conditions and to grieve over the losses in my life as a result. And so do other spoonies at any point in their journey.
It is just grotesque that there are people self-righteously using those of us struggling with mental illness, cancer, or chronic invisible illness (to name a few) as their motivation, or to shame others with similar struggles. I don’t want my accomplishments to ever be used to make someone feel inadequate.
The myths that are perpetuated by inspiration porn make it harder to be honest about what we as spoonies experience, which is why it’s time to start calling ableism out wherever and whenever we see it. Just because one person with MS can work a full time job does not mean that another MS patient is faking their inability to work. It’s such a simple thing, to validate someone, yet we don’t do it enough.
You wouldn’t worry about being polite when calling out racism or homophobia, so why would you worry about offending people when you call out their discriminatory attitudes towards chronic illness, disability, neurodivergence, mental illness, and chronic pain?
When I first came down with an invisible illness shortly after being in a car struck by a semi-truck, things looked pretty bleak.
My thought process after six months of dealing with the constant doctor visits and physical therapy, with the pain, fatigue, and fevers, was that either me or my illness was gonna go. Both of us were not gonna share this body.
Fix it or kill me. That was my motto. I could not conceive of a world in which I could not work, but in which I still had value. Value despite a dollar amount I was bringing in. No part of me wanted to accept that I would have to learn to live with this, or that my life not only had to be paused, but also that I may never be able to participate in the same ways as before no matter what I tried to cure myself. We hadn’t even started talking about disease processes or autoimmune or anything at all other than injury from the car accident, but I was frustrated that I just kept getting worse the more work I did to heal.
On the days in between flare ups, before I knew what a flare up even was, I insisted to myself that I was cured, and I was horribly let down and unprepared for every single episode or new symptom that manifested.
When people told me it would be easier and better to approach my illness from a place of positivity, I was furious, because they were making the assumption that I wanted to live with pain in every part of my body, and I really did not, at least not at that point. I had just recently been perfectly healthy, my body and brain up to any challenge set in front of me. How could I adjust to being so drastically limited and in so much pain I couldn’t even drive or work a full shift? It truly seemed impossible.
It also felt like when people tried to encourage me to make peace with all the unknowns and all the debilitating symptoms they were implying that mind over matter would cure me, or at least allow me to live a ‘normal’ or fulfilling life. Again, a life without a job and my recently hard-won independence seemed so completely unfulfilling. I went straight into defensive language, outbursts, and isolation at the first suggestion that somehow I was expected to be strong enough to cope with physical weakness, fatigue, pain, sensitivities to sound, light, chemicals, smells, and touch, energy crashes, cognitive dysfunction, lack of ability to work or drive, and the accompanying guilt and grief that go with losing your place in life right after you gain autonomy over it for the first time. I could find so many more reasons to be upset than to be optimistic. It felt like everything I loved had been ripped away, like all my choices had been taken from me. Of course that isn’t true, but for newly diagnosed or undiagnosed pain patients, especially at a young age, it’s entirely common to feel like it is the end of your life and nothing good will ever be possible again unless it comes packaged as a complete and total cure. The temptation is to retreat and hope that you can pick back up again where you left off when you feel better, and that’s acceptable with temporary injuries and illnesses, but with chronic illness there are often no “feel better” days, and there is only so much hiding from life you can do before it becomes apparent that life is going to continue, albeit differently.
I still have moments where I think I can’t handle it, and weeks where everything spins around me and I hope hope hope I will still be okay when it all lands again. I still fear for my future, I fear for my relationships, and feel insecure about my lowered libido, frequent whining, fitness level, and inability to contribute financially. Those things are part of being human though, if I didn’t experience some guilt and upset over them, I wouldn’t be me.
Amazingly, I have learned a lot through illness. I have learned to be patient no matter how uncomfortable or unhappy I am. I have learned to take care of and prioritize myself even when it feels selfish and lazy. I have learned that internalized ableism is what makes me feel that way, and that ableism does not do me any good, especially not when it has become a part of my own thought process. I have learned the importance of asking for help, though I haven’t quite mastered actually asking for it. So much has sunk in; things that I was resistant to when fibromyalgia and chronic fatigue syndrome first reared their heads. I wonder if I am even the same person anymore, but not in a totally negative way.
I have learned above all that there is not as much wrong with me as there is with a society that teaches people to base worth off of income earned, sexual intensity, physical ability, and even intelligence. There is nothing wrong with having an excess of one or even all of those things. But there is nothing inherently better about possessing those things, either. Except that it certainly makes your way in life a lot easier to have money, health, sex appeal, and unlimited brainpower. Maybe that’s what I like more about myself now; it’s not that easy anymore, I can’t just draw on one of those things and call myself a better person for having it. I can’t reassure myself with meaningless attributes, and that is its own kind of blessing. I have to concern myself instead with things like courage, persistence, kindness, and even that elusive thing we call happiness. Amidst all the pain, being ill has given me something wonderful; it has allowed me to seek out those true, meaningful, beautiful traits in others, regardless of what value society has assigned to someone.
I’m actually surprised that the person I was ten years ago has grown up into a person who does not hate herself and who rarely wastes energy on disliking others. It’s a pleasant realization. I really believe I must have hated myself to treat my abled and active body with such disdain, and to have thought I was so boring when my life was always so full of unique friendships and passions, and to have constantly been comparing myself to others and feeling so shortchanged. Not to say I don’t have moments where my body is a source of insecurity, and I certainly get frustrated with the slow, meandering pace that my brain operates at now. Somehow though, over the years, the negativity has become tempered with “but tomorrow I will be grateful for what I do have”.
A lot of my current (relative) level of peace has to do with getting almost all the way off of Lyrica and starting to paint again (more about that soon!). A lot of it has to do with this blog and the wonderful people who have introduced themselves and the strong sense of community that lives here. Also through the groups I have been invited into because of my writing here. A lot has to do with therapy, some of it with self-therapy techniques, and some with the actual, lasting progress I have made along the way. It’s easy to look back at three and a half years of illness and feel overwhelmed with all the life I have not lived in that time. I had planned to have a career and a child by now, and perhaps to have bought my house.
Ten years ago, I would have only seen that big dark cloud of not measuring up materially to the person I had set out to become, and I never would have noticed all the glints of silver lining to be found from where I’m standing in the rain. Three years ago, I feared there was no happiness or peace to be found amongst the terror and the overwhelming nature of being sick in my early twenties. Two years ago, I knew that others lived with diseases and still had fulfilling lives, but the knowledge just made me angry. A year ago, the knowledge that others out there were dealing with similar things and did not want to die every single day started to give me hope, and this blog helped me find those people and learn the self-acceptance that I needed so badly.
Now, I want to start to figure out what I can do to give back, but I have taken a pretty big set back this week by conscious overexertion so I could spend time with my family and my mom while she was visiting Oregon for ten days. During my recovery from this, I will be writing more and pondering what I have to contribute, and where the chronic pain community would be best served by what I do have to offer.
Thank you for reading my blog, thank you for reaching out to me, thank you for being so understanding and gentle, and so patient. I couldn’t have done it without you.
Maybe someone else could use it too?
Chronic illness warriors are great at pushing through, but as we all know, that is not always the best or healthiest option, although sometimes it seems like the only option. Pushing through can lead to a flare up that sets us back for days, weeks, or even months. Rest is a real job with chronic illness. No matter how we may be feeling, even if it’s better than usual, every single day consists of maintenance and making difficult choices that can help or harm us in the quest for balance. Most of the choices you have to make are things the people around you cannot understand. That makes it even more difficult to prioritize our own well-being in stressful situations.
To all those who wrestle with the guilt surrounding being chronically ill or in constant pain, I am right there with you.
Love you guys!
I just posted a new page listing all of the successful earn-money-at-home websites I am a member of so far! Here’s the first portion, but head over to the actual page for the list of websites with links taking you to the sign up page for each.
click here to skip to the new page: My Recommendations for Make-Money-At-Home Websites
I’m relatively new to this whole making money at home with my computer thing, I remember trying to do it when I was younger and failing miserably at it, and thinking that the whole thing was a scam. 18-year-old me was just going about it all wrong, and I didn’t do my homework before I joined websites. There are a surprising array of no-credit-card-required product evaluations, surveys, small tasks answering questions or matching things online, games, videos, emails, paid-to-click sites and search engines that earn you points while you use them. The trouble is weeding through the crappy sites to the ones where you get lots of opportunities, a good sign-on bonus, and which have many different options for making money. There are two kinds of these websites, my personal favorite being the ones that pay out in cash. Beware of sites that only pay in points and auctions. I do have a couple accounts where my balance is shown in points rather than cash, but the ones which have made the cut actually pay out in equivalent cash rewards to paypal or amazon at the very least, no points-for-auction-entries sites will ever be listed here, I do not want anyone wasting their time.
This is a new adventure for me, but as soon as I started making money at it, I couldn’t stop thinking of all the people I know who are stuck with part time or no work at all, and I wanted to share this thing I’m doing with all of you who would benefit from it most.
Taking surveys and doing small tasks online distracts me from pain, but above all it is something that I can put away whenever my pain is too overwhelming to read or focus.
I also made a separate page that collects all of my current posts and the many, many future posts I have planned for my Chronic Pain Toolkit series. I want to work on the Toolkit as often as possible in the coming year and am excited to commit to writing more empowering posts.
2104 has passed me in a total haze, or I have passed it, either way. I will not be sad to see it go it because I honestly don’t remember most of it. Funny how our brains protect us from remembering the very worst pains.
The next year will not be merely survived. In 2015 I am determined to get back to the business of thriving again. Yet, I know that even if I find myself only barely hanging on again, I will try to stay happy with myself no matter what. Even just surviving with a major chronic illness or a handful of them, is a victory, and a big one. Some days it might be hard to remember why we are here, especially in the depths of pain, exhaustion and illness. We can lose sight of the next day and the day after that, and the simple promises held therein. It’s not hard to do. Hanging on through the worst times, this is no small achievement! Let’s take a second to congratulate ourselves on that! In the end, no matter what attitude we have about leaving 2014 behind, we are all wiser for having gotten through it. Some of us are also stronger. Some of us are feeling defeated, guilty, or shattered. But we are all still here.
I for one am actually (dare I say it) hopeful for the first time in years about my future. Nervous, nails bitten down all the way, unable to imagine what the future will hold, but excited and hopeful too. I’m not used to having anything that is actually important to me to show for myself at the end of each year, but this year my mental health is very important to me, and I have seen some small but important changes taking place there which I cannot help but be overjoyed by.
I hope 2015 brings you all much to be joyful about, and I cannot thank my friends and readers enough for your support, kindness, and the warmth you have infused into my world! ❤
Let’s get this started, 2015.
I’m still getting used to the idea that I can’t be fixed, because I’m not broken in the first place. Everything good about me is still here. I am not worth any less than before I became ill.
Harder to get used to is the idea that I didn’t do everything wrong; that this is exactly where I need to be right now.
Hardest of all the lessons I am learning is that I too deserve to be happy and loved. I even deserve to love myself, for that matter.
Crazy how notions that seem so simple and straightforward, things I tell people all the time and think I understand, will refuse to fully sink in for myself until the right moment.
It took me until this year to realize that my vision of my own relative unattractiveness was based on something false all along, which is the idea that women (or anyone really), owe it to the world to be beautiful, pretty, lovely, and that some women are somehow more attractive than others based on a ridiculous set of rules guiding conventional beauty, which, hooray, most of us were brought up with.
We don’t owe the world a pretty outer shell! However we define that for ourselves, let’s only define it so we can junk that and write a new set of rules that direct us to look inward and associate things like honesty, kindness, generosity, and strength with beauty.
None of us owe it to anyone to look any way other than we were born looking. We were born as perfect as we are going to get, and there is no point in trying to be anything else, on the outside or inside. It’s a crazy realization, and it lifted some of the emotional fatigue and numbness I have been contending with lately. Of course I still can appreciate outer beauty, without associating it with a person’s value, and I do love to look at pretty pictures as much as the next person, so aesthetic beauty will always have a place in my heart. However, I vow to stop depreciating myself because I do not compete visually with someone else.
Being ill means that my looks just aren’t as important to me. They were never that important, let’s be honest. I frequently hang out in comfy tennis shoes, yoga pants, men’s band tees, and hoodies that are too big for me. I have always had so much black in my closet that when I do the laundry I’m just pulling one black garment off of the next until I find the fabric that feels right. I wore flannels and ripped jeans in the awkward in-between time when the 90’s forgot to leave the small towns in the Northwest, and before it came back into fashion in the bigger cities again. I promise I did have a girly phase that started about five years ago and the development of which has slowed to a crawl since being diagnosed with fibro, then adult ADHD, then one pain condition after another including CFS/ME, Occipital and Trigeminal Neuralgia, among several others. What effort I was beginning to expend on outfits and the occasional fully painted face suddenly went into surviving.
I am not proud that I don’t have the energy to shower every day, I’m not proud that I only have a couple put together outfits to wear outside of the house now, and I’m not proud that doing my make up is way, way too much effort even for special occasions; the best I’ve manged in years is powder foundation and a little bit of a cat eye with liquid liner. I’m not proud that the teal in my hair is more of seafoam green, and I haven’t had it cut by a professional in almost five years.
Here’s the radical part though: I’m also not ashamed. Not anymore. This is me as much as I have ever been me at any other time in my life. If it means I can work on a blog post or help my boyfriend with his homework or make one dinner this week, it’s worth giving up some time spent on the outer shell and focusing that precious energy onto far more important priorities.
I understand that to some, this sounds like allowing my illness to win. However, this part of my journey has been incredibly empowering. Would I like to effortlessly be considered beautiful? Of course, but only if I could still know for sure that the people in my life were in it for me and not the shell of me. Does it break my heart that I’m not thin and my eyebrows are too dark? Not anymore! I have more important things to worry about, and my shell looks just fine in the grand scheme of things. I look like I’m supposed to look. Not by dolling up myself up, covering things up, creating illusions and using smoke and mirrors to hide the things that aren’t considered pretty. Instead, I’m finding my beauty, the one I have had all along regardless of fashion sense, diets, and make up, and I’m finding it by peeling off the layers, one by one. Asking myself why these things are considered beautiful and then repeating the answer back to myself until it just sounds so silly and frivolous. In the process of gaining this insight and sense of self-worth for the real, permanent parts of myself, I am also humbled. I am not pretty because I have high cheekbones and almond shaped eyes, or because I put on expensive perfume or drew the most perfect pair of cat eyes on my lids. It’s okay to appreciate those things and recognize them, but assigning a value to aspects of our physical beauty is a losing game for everyone. What would happen if all that were taken away in an instant? You would still need to feel valuable, and guess what? You would still be valuable. That’s an important, seriously liberating concept.
As women we waste such precious time, and teach others so many bad behaviors, by being so hard on ourselves and being hard on other women. I wish for everyone’s sake that this would stop. Just because another woman wants to dress up and have every hair in place, does not mean she is also brainless or any other stereotypical assumption I could make. It does not give me the right to tell my boyfriend she looks like a slut, because I’m jealous (read: insecure) of her legs in that skirt and those heels. What right do I have to treat her like an object? What do I know about her life? Maybe she hates wearing that stuff and does it because she was brought up in a culture where women behave and dress in a certain way. Maybe she loves dressing up; maybe it’s her creative outlet. Some women see make up as a lie, some see it as warpaint.
Nothing is as simple as it seems, and the more we assume, the more we pile the judgement on others around us, the more damage we do to ourselves. In the process of calling that girl a slut out of insecurity, I would also have been degrading myself, continuing a pattern of self-defeating hubris wherein I must be better than everyone else in some way, but also feel bad for the areas in life in which I don’t meet expectations. Why? Why can’t I be exactly as good, exactly as deserving, exactly as sexy, as the next woman? Why can’t the next woman be exactly as creative, exactly as kind, and exactly as thoughtful as I strive to be?
The truth is, we are all deserving, sexy, wonderfully creative, and thoughtful. We are not better or worse than anyone else. I am not better or worse than anyone else.
I think even within the spoonie community, sadly there is a culture of one-upping each other that is dangerous and undermines our strength as a whole. If we can’t trust fellow pain and illness warriors with our raw, real selves, who in the world can we trust?
Together, our voices are stronger than ever. Together we have the power to reverse stigma, to undo prejudice against the disabled and those with invisible illness. We can absolutely create a better world in which the chronically ill can lead fuller and more enriching lives. We have the power to make the world less lonely for others just by existing and sharing our stories. That is incredible! Before I was sick, I didn’t believe in my ability to change the world for the better. Now I understand that a life with purpose is the only possible way forward, and as a result I see potential everywhere to educate, to reach out, and to encourage those around me who need it most.
So here’s my style tip of the year: Own it. Whatever “it” is. If you’re not into pretty dresses, don’t force yourself to wear them. If you’re not okay being seen in your pajamas, that isn’t wrong either. Be comfortable in your skin, and kick standards of conventional beauty to the curb for good. No one else knows how we earned our gray hair, our medical equipment, our scars, our weight gain or weight loss, our wrinkles, or our battle wounds, but it shouldn’t matter. We should never be measured by something skin deep.
For years I have read the words of so many girls and women with illness, no matter age, and unfortunately the theme of shame over looks is constant, it’s instilled in the language we use to differentiate ourselves, and even in compliments we dole out. I hear the same longing to look “normal” and “not sick”.
Having a chronic illness, sadly the pressure to somehow keep up with the person we used to be is immense, specifically the pressure to look like the person we used to look like. Some of that pressure comes from within. Mostly it comes from a culture steeped in telling women what “beautiful” is, instead of letting us tell the world how we are each uniquely and inherently beautiful.
I think we should spread a new message to girls and boys alike: Beauty is not your looks, it is a state of being.
I don’t think we need to get rid of the word or the concept of beauty, just rewrite its definition.
When I say someone is beautiful, I say so meaning they are beautiful in every possible way; that they are perfect the way they are, that they would still be perfect no matter what flaws are present or mistakes are made, and that they will continue to be just as beautiful as the years pass, if not more radiant still. That is the kind of beauty I want to encourage others to see: beauty that is layers and layers deep and only grows the more you get to know someone.
sign up for Ebates for FREE and get cash back on all your online purchases!
Read My Guest Post On Distraction Therapy For AXIS Dance Company's Blog
Help me afford to adapt my life around my illnesses by starting your own Free 30-day trial of Audible or click the link and complete any regular shopping on Amazon once you're there.
I make $5 when you start your free 30-day Audible trial and 4-6% of every purchase made on Amazon within 24 hours of using this link.
THANK YOU FOR YOUR SUPPORT!
- 121,371 lovely readers
Looking for Something Specific?
- Precious Diagnosis: What’s in a Name?
- Seeing Possibility
- Neurontin and Lyrica are a Death Sentence for New Brain Synapses
- Gift Ideas for People with Chronic Illness and Disabilities
- Distraction Therapy, A Guest Post For AXIS Dance Company’s Awesome Blog, And Exciting New Business Ventures
- Harms/Benefits of Somatic Symptom Disorder
- The Autonomic Nervous System & Why It Matters
- A Spoonie Poem for All With Chronic Illness
- Staying Present During A Flare Up
- Ehlers-Danlos Syndrome Medical Emergency Information Cards