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. ❤
I have a confession, you guys:
I’m not proud of my addiction, but none-the-less, over five thousand people have chosen to enable my habit by following my Pinterest account, which I feel is basically a haphazard repository of my soul; the old me and the new me un-self-consciously coexist there, pinning images about chronic illness, gardening, art, preserving food, DIY beauty and health, style and materialism, homesteading, body image, a highly anticipated and hoped for future kiddo, and all my other dreams, projects, and ambitions.
I have over 30,000 pins since joining in 2011. Yes, I am ashamed! Yes, I know how much could I have actually accomplished in that time! A lot, probably, But when my brain was nothing but a pile of mush for over two years, Pinterest actually helped me live slightly more in the moment, it helped me make new connections in my mind and learn new skills, as well as taught me to dream about things beyond this second and the severe pain I feel. Pinterest in all it’s soul-sucking glory has been incredibly inspirational, and allowed me to feel like I am still putting creative energy out into the universe even when I don’t have the brain power or the physical ability to begin a craft or art project.
More importantly now, it has allowed me to visually document ideas for the future, get ideas for blog posts, and learn how to make pretty much anything from scratch! Recently I have slowed down my pinning, and now spend more time making sure links actually work and deleting ugly dresses on my street style board. But I am still very active there and will remain so as long as it is even a mild creative outlet for me during my worst times. I refer to it often for herbal remedies, recipes, DIY project advice, and just for the sake of aesthetic beauty in general. I cannot count the number of times I have tried my hand at various pinterest projects, not always successfully, either! 🙂
Funny though it sounds, looking at other artists’ work, finding new bloggers to follow, and meeting so many other chronically ill people on Pinterest gave me the confidence to start dreaming in color again before I even had the blog; to visualize future art projects, to not be afraid of new symptoms, to think of small business ideas, and to start my new life as a blogger, an artist, and a whole, happier human being in the face of chronic illness. Not that the site did anything for me that I couldn’t have done on my own with more effort, just that I was enjoying the company of others again, using technology as a tool for reaching out to people with similar interests at a time when words were failing me.
If you’ve got lots of time to spare, can’t find the words to express how your chronic illness has effected your life, are lacking in inspiration for a project or event, or if you want to know what to do with something instead of throwing it in a landfill, come on over to the Pinterest darkside, and don’t forget to follow me while you’re at it! Please don’t hesitate to say hi while you’re over there.
If you have a post with an image that you think would drive traffic to your site, I am happy to pin any of my fellow bloggers’ work to my Chronic Illness board, which has many, many more followers than this blog! Just drop me a comment below and a link to the post and the picture you feel will help bring people to your website. I’m happy to do multiple pins for blogs too! I know how helpful it can be to have a few links to your blog circulating around Pinterest. Wouldn’t it be nice if pinning was a job? Seriously, I would rock the hell out of that for a company’s social media department!
I cannot “fix” fibromyalgia, JHS/EDS, CFS/ME, Spina Bifida, or Occipital & Trigeminal Neuralgia. They are simply things I have to make room for in my life, understanding that I actually have a longer list of medical conditions than that by far, that are not going away on their own, and that have no cures. Say you found yourself in this position of going from healthy to completely unwell in less than three months. After a year or so, it becomes unbearable to the point of not being able to work a 9-5 job anymore, then not even a very part-time (12-18 hours a week) job, despite your very best efforts. No one understands what’s happening to you, including yourself. But it’s always something, it seems, every day. From crippling pain to autonomic dysfunction to dislocations to migraines to allodynia to candida overgrowth to skin lesions; name a symptom and it’s probably happened many times.
So this sucks, you think to yourself. I mean, sucks doesn’t even begin to cover it, but you grieve, you mourn, you see red, you get hysterical, you completely melt down. Allow that. It’s making room for the illness in your life. This part just hurts, on every level. But it’s worth it. There is so much happiness in life left, even with the things that have been taken away by illness.
I implore you not to not feel guilty for going after those things which please you, and which are still very much possible. Maybe this wasn’t the plan all along, but life is not over. It is being rearranged. You still have control, even when it doesn’t seem like it.
The guilt is the tricky part. Illness and pain can make you extremely bitter and withdrawn, and they can also make you extremely fierce, creative, and compassionate. Let’s be fierce, together!
I can’t cure myself, but I can and will continue to gain strength and happiness. In that spirit, I have been exploring new avenues that I couldn’t see myself taking before I was ill. The options to write, to be an artist, to be a graphic designer, to start a small business, to create and teach and advocate, all these things were possible before, but I had no idea. Now I know that I can do things in my life that will make me happier than any path I was on before. I have been through hell, and will continue to visit that territory throughout life. But I am not unhappy. There is plenty of beauty, life, love, and creativity left in me still. As there is so much beauty and love in you as well! ❤
Spoonies travel a lesser-taken road, but we do so in style, I believe! Especially when we band together for awareness and advocacy.
Chronic pain isn’t easy to express, not in words or pictures. I have struggled to express how chronic pain actually feels through art. My paintings are abstract multimedia pieces, and for the most part they’re just so I have something bright to look at around my house. They leave the onlooker with no idea that I suffer with every brush stroke, every adhered scrap, every swipe of the palette knife. These five artists, however, have managed to express so many of the things I feel every day, but have no idea how to show people a visual representation of.
Since I’ve been feeling particularly lousy and in way more pain than is even normal for me, I’m gonna go ahead and let this count as a blog post? I want to do a whole series on art relating to chronic illness, but we will see. I’m so disorganized!
1. Of course, let’s start it off with Frida, who had a pain syndrome that many have speculated was fibromyalgia, as well as severe and debilitating chronic back pain which she has portrayed so clearly here. I have always loved this self-portrait, entitled “The Broken Column” even long before I developed clear symptoms of fibro:
#SpineDamage #NerveDamage #FracturedVertebrae #DegenerativeDiscDisorder #HerniatedDisc
2. The damage done to my low back from getting hit by a semi truck. Now I feel like this when my back goes out, which is kind of a lot because of the addition of Spina Bifida Occulta and Joint Hypermobility Syndrome:
#HerniatedDisc #DegenerativeDiscDisease #Scoliosis #Lordosis #Osteoarthritis #EhlerDanlosSyndrome #JointHypermobilitySyndrome #SpinaBifidaOcculta
3. Nerve pain, just imagine those lines about an inch underneath your skin, until it’s basically in your bones:
#Neuropathy #NervePain #NerveDamage
4. This one reminds me so clearly of the one sided occipital migraines and trigeminal neuralgia which I am constantly dealing with:
#OccipitalNeuralgia #TrigeminalNeuralgia #OccipitalMigraines #TMJ
5. Sad but true. This is what yoga feels like now. I am always telling my boyfriend that it feels like my spine is trying to rip clean free of the rest of my body, just like this:
I’m not posting these for pity or for shock value, sometimes it helps me to have a visualization of my pain ,because it helps me to picture it disappearing while I meditate. Other times I just want to know I’m not alone. I’m sure I’m not the only one who feels a little bit validated when they see their chronic pain taken seriously. These artists take pain seriously, but they also managed to turn their pain into something creative. Using pain as inspiration for making beautiful things or things that others will relate to is a huge goal of mine as a formerly creative person. Illness can’t have my creativity, and these honest portrayals of the agony of chronic pain help me remember that art and the freedom it gives us is such an integral part of healing. Time to start painting again!
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