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!
Gaining Ground Despite Chronic Illness
Since I first started going down the rabbit hole into the land of stranger and stranger medical mysteries, I have been losing things.
For three years, all I could see were the things that were slipping through my fingers, and I grieved considerably for each loss. I lost my job, my ability to drive, my self-respect, my future, and even at one point I let myself believe that I had lost the ability to be a good mother when the time comes. My grief was so strong that it blinded me to the possibilities that were opening up in front of me even as other doors closed.
Change is scary, from going to a new school, being diagnosed with a chronic illness, or starting a new business, newness is challenging. For myself, I had to learn to accept that I cannot change the stigma against Fibro alone, and I cannot make my doctors or my boyfriend or my mom understand it, but I can and have found others out there who feel what I feel and struggle with burdensome illnesses.Through reaching out to people in similar situations, I am hoping we can bring out the best in each other, and that is exactly what I have found here. Within the chronic illness blogging community there is so much support and enthusiasm that I can’t help but get swept up in it all. My healing process didn’t really begin until this blog got up and running. Yet, I have to remember that even once started, healing does not look like a straight line, especially with illnesses and conditions I will have for the rest of my life. I will always have very, very, very bad days and then there will always be awesome days to balance them out.
There is considerable strength to be found in just living to the best of my ability. Easier said than done, but a goal for me to aim towards!
There is no simple way to make the illnesses we face easier to confront, or even to take away the pain for a single day, as much as I wish otherwise. We spend our days fighting an invisible monster called Pain, and every day he is there when we wake up. We do the best we can, whether we are battling our illness from bed, from crutches, a wheelchair, a scooter, or our feet, every day is a marathon for us.
When we start to feel like we’re losing control of everything around us because of chronic illness and pain, the place where we have most control is in our self-care and self-love, which I couldn’t even fathom until I began to write a page of weekly affirmations. In the midst of the fear and chaos is acceptance. If you are in the grieving stage, I promise, acceptance is the best thing since sliced bread. It doesn’t happen overnight and it doesn’t happen easily all the time, but when you look back, you’ll see how far you’ve come. And it is worth it. We all deserve to accept ourselves, illnesses and all. If acceptance is an area you struggle in, why not try jotting down self-compliments or reassurances. They can be all the things you wish people told you, it can be all the things you believe about yourself, it can be as simple as saying “I am passionate about writing and I have a lot to say”, “I deserve to be loved”, or “last night I got enough sleep” or as complex as you need them to be. I feel like I’m not even writing when I do this exercise, the words just spill onto the paper from somewhere deep inside of me. I guess I must have been not allowing myself to think positive, comforting, reassuring things for a long time. I don’t know why, but I do know I have an awful lot of affirmations to get off my chest. Certain ones I find myself writing over and over again each week and sometimes on other days as well. These seem to be things I have a hard time believing, but which are important to me none the less. Someday, hopefully even these hard-to-digest messages of self-love will begin to sink in, and gradually, as many of the other affirmations have, they will become a part of every day outlook. Affirmations have helped me gain so much that I didn’t even know I was missing. So instead of losing things, now I can focus on what is still there, what is inside me that I can love and share with the world.
If you’re looking for a good way to start 2015 off, writing down a list of positive things about yourself can change your perspective on life. It can give you that boost of self-esteem and motivation you were looking for. It’s easy, painless, and you don’t have anything to lose! I bet you will be amazed by what you find out when you start writing. ❤
I hope that everyone had a wonderful weekend!
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.
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