Everybody has an evil little voice in their head that tells them they’re a piece of shit, or that something nice that happened to them was really sinister, or a good friend is out to get them. Many people name their evil little voice. I never have, but lately I’ve been thinking “anaconda” or “Brenda.” Mainly because my anaconda don’t want none unless you’ve got buns hun, and Brenda sounds like an annoying girl name. Like the Karen memes, but for a 14 year old. A blonde, cluelessly destructive 14 year old.
My Brenda anaconda (this is getting weird I know) likes to distort memories. Sometimes I wake up in the morning and she is flat out screaming at me that I am a horrible person and I should just… well… not deserve to live and I am an idiotic piece of shit how dare I take up space?
Brenda is not fun and she is basically a dick.
Brenda’s anaconda likes to blame other people and bite me into becoming a victim which is way not cool because other people have their own damn lives and I am a fucking person too.
So fuck off, Brenda. I don’t want none of your anaconda. CONSENT BITCH.
Today, I had to take steroids. For the third time this week I ended up walking around the house using my wedding cane. It was terrible but the steroids helped and I’m keeping my legs elevated.
Another thing about today and the other days of the week I’ve used a mobility aid, whether I’ve left the house or not, I’ve done a full hair and makeup getup, and worn a pretty dress. Yesterday I tried the Pinterest listerine pedicure, which exfoliated my feet but turned them blue, and painted my nails red. I’ll probably stick to Korean feet masks.
Every time I make myself pretty, I take a selfie because of all the extra effort that went into it, especially if it was on a bad day. I am proud of the work it took to doll myself up, whether it’s a pedicure, skincare, an outfit, my hair, my makeup, or a mix.
Going back to being a child, I have found strength in my femininity. Many people denounce selfies as vain, but after my illness, it’s simply me saying, “hey, I did it!”
I’m not looking for attention or accolades. Just the fact that I did it for myself and have something to look back on is enough to help me fight my battle against chronic illness.
When I was engaged to my husband, I was in the process of being diagnosed with lupus and fibromyalgia. During what should have been my time of joy, I was ridiculously sick. Therefore my wedding, although I tended to it the best I could, did not have all the typical girl-things most brides obsess about.
To most women, your wedding day is your most beautiful day – and that means your physical self. I had some radical self-acceptance when it came to my appearance. There were just some things I couldn’t control, some things I had no energy to control, and some things I knew would pain me to control to the point where the gain wasn’t worth the cost.
I wondered if other chronically ill brides had similar experiences, so I wrote this short listicle.
1. Losing weight
At the time I was a vegan, swimming for 2 hours each day, and doing 45 minutes of yoga. By the time the month of my wedding had rolled around I had astronomically gained weight from pain meds. I was also bed bound and couldn’t walk like I used to. When you’ve gone from standing unassisted to needing a cane, you’re gonna nope out of doing crash dieting, binging, and sacrificing your hate-selfies to the weight loss gods. I bought WalMart spandex to get into my dress and got on with my life.
After the wedding, almost immediately after the honeymoon, I was also diagnosed with hypothyroidism after about six months of looking for it. Chuckee darn, y’all, I could’ve guessed that!
Now Pinterest and any other god awful website (I’m looking at you, Instagram) shows me body shaming, hateful things that I wish I knew how to tell the website to block, because back when I was thin I didn’t have these problems. I wonder if it’s looking at me through the camera and going, “Oh, look, a fat girl. We have to make her hate herself so she’ll use the site more.” Kinda like the time Pinterest kept sending me suicide notes while I was starting therapy. Who writes these algorithms? Yeah, I don’t know either. I only use Pinterest to pin Chronic Illness Business stuff.
In all, I gave up on sweating for the wedding, because I couldn’t move. I don’t regret it. During the time I still had a gentle yoga workout regimen, but the cards weren’t in my hands.
2. Having perfect skin
I was super stressed out and so sick I couldn’t communicate to my doctors I didn’t deem essential. For my doctors I deemed essential, such as my rheumatologist and neurologist, I would create PowerPoints on my tablet. When it came time to talk, I would pass the tablet over to them. So when it came time to see the derm, I didn’t create one. I figured he’d look at my skin and be done with it.
Unfortunately I was expected to talk at the derm, and I was not coherent due to the pain I was in. I remember the smirk on the doctor’s face. Not to mention when I was prescribed an acne cream, I couldn’t remember to use it due to brain fog and constantly being on the go with doctor’s appointments sometimes at 8AM. I lived 45 minutes out from the city.
During this time, I was also watched for developing a lupus rash, which the derm didn’t seem to understand, and proceeded to tell me what allergy shots were and how they worked like I was in 5th grade.
Are you a fellow spoonie bride?
Don’t worry. You’re still going to be beautiful whether you labored over your appearance for months or years or not. You should be yourself on your wedding day. Whatever form that is, just is. Nobody owes the world a physical beauty that is strictly theirs to keep, not even on their wedding day. Sometimes we are all forced to be who we are. If you fall in that boat, don’t worry.
I notice a trend in my life, in other blogger’s lives, and in human beings in general. It’s of helplessness and hopelessness: being a victim of who you are and your circumstances.
I created this blog to take the stones thrown at me by life and create a castle out of them. For now, it’s what serves me – telling my story not to inspire others, but so that others in similar situations don’t feel so alone, that they may find strength in solidarity.
Oftentimes in the chronically ill community it is said that you have to cut out negativity in your life, and this includes friends. I recently did this with a particularly demeaning and diminutive friend.
She had always struck me as a snaggle-toothed, mousy girl who was kind-hearted but self-absorbed. Day and night she would text me her problems, but didn’t have time for mine. She belittled my diagnoses and insulted my wedding dress.
Eventually she turned out to be racist, sexist, and homophobic. This led me to the ethical questions of being so close to her. Was it wise to be associated with someone who thought such hateful thoughts and assumed they were mine as well when I couldn’t be more different? Is it okay to let yourself be friends with people who are so prejudiced? Does that mean you condone that line of thinking?
Ultimately, a racist statement and her general selfish mannerisms led me to cut ties.
She lived her life thinking she was a victim – always a problem, never having the power to solve it. While demeaning socialism she was a job hopper on minimum wages living with her parents and had a bachelor’s degree from a supposedly reputable private school.
Everything always happened to her. This was how she went from being a newspaper journalist to working at a Goodwill. She didn’t take back her power before power took her.
As for me, I admit I fall into the power trap as we all do at times. Sometimes I curse my pain and how I have no control. We may not have a say in the hands we’re dealt, but we can learn how to play them.
A few years ago, I came across a slew of articles against teaching kids the importance of self-confidence and self-worth. These articles were on reputable websites such as Huffington Post around 2011.
At the time, I felt something acute pierce my chest, a sort of pallid, sudden sadness for these authors who blamed Disney and participation trophies for their own failures. It was pathetic. Couldn’t they see that pointing fingers at children’s movies was embarrassing and only they were in control of how they reacted to their lives, not a woe-earned participation trophy in fourth grade?
As I grew older, I saw more pointed blame at elementary school gifted and talented programs. Why? Because the child was told they were special, and they didn’t have to earn it.
Let me tell you a few things I have always believed that nobody ever taught me:
All individuals are unique, there are no unique individuals or nonconformists because we are all born under different circumstances and think different thoughts. We are all unique nonconformists.
Everyone is inherently divine and has a light inside them, which makes them worthy of respect. It doesn’t matter if you’re the lawyer or the janitor in the office. Most of us have flipped a burger at least once and we all fall on hard times.
This means you are special, you are worthy, and you don’t have to earn it.
Thing is, I believed this for other people. I didn’t believe it for myself.
This meant these thoughts were inauthentic, because if you don’t hold these three key truths for yourself, you will never go all the way genuinely in your mind and actions for anyone else.
What you’ll end up being is a ditherer – a washout – who is a mouse of a person. People will push you around and you’ll think it’s okay because of the three principles. They are inherently special, so you have to do what they say. But because you don’t hold yourself to be inherently special, your self-esteem suffers, and you begin to think nasty thoughts about these other people. The people who “push you around” may not even be pushing you around, they might be decent, ordinary humans trying to get on with their lives. But your warped point of view has them out to be devils. Or the pushers really could be pushy – your lack of self-esteem has driven you to choose bad friends.
What’s the point here? If you see your loved ones as hecklers, you aren’t going to love them well. You will make yourself out to be a victim. Yes, you might have good reasons – a troubled past, or a Disney movie (Bambi is very traumatic) but at the end of the day, being the loving, kind self you think you are starts with being loving and kind to yourself. Maybe start with Wreck-It-Ralph and work your way up.
Every once in a while, a well-intentioned family member, a friend, or a medical professional will tell me I’m not fighting hard enough, that I’m not taking care of myself, et cetera. The opposite used to be true – I would receive compliments from my doctors for the presentations I would make each time I came in. One nurse said she could tell I was not succumbing, and complimented me for my strength, saying this was why she wanted to help me.
There’s a few things I want to say here. First, all people with chronic illnesses deserve help and respect, whether you perceive them to be weak or strong. Secondly, when it comes to battles, you win some and you lose some. Wars fluctuate, and health is a journey – it isn’t linear. When I was first diagnosed with fibromyalgia, I was exercising at least an hour a day, every day, sometimes two hours, and had a strict vegan diet. Then winter came with worse symptoms and I was planning a wedding with in-laws I had issues with. My mental health was in the toilet, and as Bruce Lee wisely said, “The body follows the mind.”
My mind worsened as my PTSD triggered and my marriage fell apart before it really even began. Again, the body follows the mind, and I got knocked off of my pursuit of physical health horse in pursuit of improving my mental health and my marriage. Once again reiterating, the body follows the mind.
This is not to give a laundry list of excuses. I merely want to extrapolate a bit that the body and mind are connected, and if the mind suffers, the body usually does too. I’m in more stress than I ever have in my life. My fibromyalgia is kicking it in to high gear.
So yes, I may not be taking as good care of my self physically right now, but I am trying to invest in my mind to get to that point. The only way out of hell is through. A marriage being under the gun takes precedence over buying organic food, especially if you can’t afford it and the two of you are $3k over in medical bills. Could the organic food prevent the medical bills? Possibly. Could a gym membership? Possibly.
This is the crux of it: health being accessible and affordable. Many low income Americans suffer the most from health maladies because they can’t afford preventative care and the care they need from not being able to take care of themselves.
My husband and I aren’t low income, but the two of us on one salary with all of my exorbitant medical bills puts us in a bind.
And I am fighting in other ways – I still stay organized with my symptoms, I’m still productive, and I annoy my doctors if I think something is wrong. I read literature on health subjects. I hope to have a book review or two coming out soon.
Please remember that when people say these things to you, they’re probably trying to be helpful. No one can truly understand anyone else. Take heart.
Disclosure: Bear in mind that some of the links in this post are affiliate links and if you go through them to make a purchase I will earn a commission. Keep in mind that I link these companies and their products because of their quality and not because of the commission I receive from your purchases. The decision is yours, and whether or not you decide to buy something is completely up to you.
I’m a big believer that you should feel fabulous all the time, even if you don’t think you look it or feel it. As someone with a chronic illness, particularly a stigmatized chronic illness like fibromyalgia, this can be hard. A large obstacle to me feeling like I’m gorgeous or believing I’m fabulous is when my pain levels are high. Nothing can make me hate myself more when my body leads me to believe it hates me – even though from a logical standpoint, I know it doesn’t.
Removing myself from my chronic pain is impossible on bad pain days, nor should I do so completely. But there is a way to be friends with yourself and your body to feel gorgeous on a bad pain day with chronic illness.
Listen to a lighthearted audiobook
I especially enjoy Rainbow Rowell’s audiobooks, and right now a favorite is Eleanor & Park. A good, girly audiobook to transform me into the Chronic Illness Warrior Princess of my dreams is just what I need to feel gorgeous on a bad pain day.
Help your body feel gorgeous with luxury fabrics in – and this is important – your favorite colors! Looking at your favorite colors will remind your mind of pleasant things, and the wholesome, needed comfort of the blankets will bring your body back to a sateen Earth, where you are queen of your own world. A mind-body tactile connection is perfect for conquering all kinds of chronic illnesses and the pain that comes with them.
I’m the kind of girl who has to have her nails done, but was a budget bride and is a thrifty wife short on cash. Any day of the week can be manicure day with imPRESS Stick-On Nails available on Amazon or at your local drug store. Even on my worst chronic pain days, with swollen hands, I can maneuver these easy to use press-on nails for a glamorous from the spa manicure. (They’re better than the spa manicures I’ve gotten, honestly.) If one falls off, simply pick it up and gently press back on.
Lotion is one of the many ways I cope with chronic pain and anxiety. I’m a big believer in aromatherapy, which will be outlined further below. My holy grail lotion is Dream Cream from Lush. It’s lightly scented with rose water and is a cult favorite for those with eczema and psoriasis. The lotion is extremely decadent and creamy, making you feel as if you deserve this luscious treatment. You do, my fellow Chronic Illness Warrior Queen! This is an excellent, simple way to feel gorgeous on a bad pain day.
Bring the outside in or travel to exotic destinations with your candle scents of choice, or if you are sensitive to smells, simply watch a flickering flame. When my chronic illness keeps me from traveling I love to imagine a high desert sky with a tuberose scent or trekking across Morocco with sandalwood. Please note that like unscented candles, there are also unscented lotions to help you feel safe from migraines and luxurious.
Create Your Own Story
If you absolutely can’t move or get out of bed because of a flare from your chronic illness, record a video of yourself telling a story about your day from your imagination. Perhaps you are an enchanted knight, a princess in disguise, or a fairy queen out for revenge. Or maybe you’re just out for morning coffee. Make it as simple or grandiose as you want. Maybe just vent! Be your own best friend. It can be lonely trapped inside because of fibromyalgia, lupus, rheumatoid arthritis, or any other chronic illness imaginable.
Remember, it’s just one day.
No matter how long you’ve been in a chronic pain flare, don’t let your mind extend the pain into tomorrow. We only ever have now. Feel what you feel now, and honor yourself by saying, “I’m in pain, and I can handle this,” or if you can’t believe that, try “I’m in pain, and I am not alone.”
My Chronic Illness Warrior Queens, we are never alone when we have bad pain days. We find fabulousness in ourselves and in each other.
I had my first EMDR session yesterday, and it went… badly.
In EMDR one of the first things you do is create a safe space for yourself, and I could not visualize myself as I am in that space. I kept seeing the old me, the beautiful former model me, and I began to sob.
As someone who attempts to champion body positivity and beauty is every-ability, I was ashamed at my reaction. I knew that my issues ran deep, but I didn’t know they were this invasive. I saw the girl who I once was in my head and longed to be her. I felt that she as lightyears away, a completely different person from me, and this person existed only a year ago.
Grieved by the fact that I was two different people in such a short amount of time, the tears came. Pain shot up my esophagus, and my shoulders ached.
What’s important to remember is that I am a completely gorgeous, unknown sized, purple haired, green eyed vixen with glittery pink catseye glasses. My double chin? That is fucking gorgeous y’all. My acne? Sexy as hell. My swollen hands and legs? Hot, even if it is part of my disease.
My therapist taught me the Vegas Nerve Stimulator for times of distress, and I must say, it works. She instructed me to put my thumb on my clavicle and my other thumb below my rib cage, and silently repeat to myself “I am a beautiful human being.” I almost believed it, which was better than being in the negative hit points.
I am sexy as hell, and I believe it.
So, why did I have this problem? Why do so many women who go through life altering events, and body altering events, have this problem?
As women we are taught we are our bodies, and that our bodies do not belong to us. Someone else gets to decide if we are sexy as hell, not us. And if that is decided, they have the opportunity and the right to act upon their urges.
But at the same time, beauty is a sacred thing, like art. I believe all life is a form of art, which is a reason why I enjoy painting and drawing nature. There is inherent divinity, and therefore beauty and light, everywhere and in everyone.
When a woman becomes sick, it’s as if that divinity and light is becoming assaulted, because society says sick isn’t beautiful. But real beauty is still there. No other person can negate her divinity and inner light, even if she becomes bitter.
I’m here to tell you to all my ladies down with the sickness, you never lost your beauty. Now I’m reminded of the Alanis Morissette song that goes, “I’m sick but I’m pretty, BABY, and what it all goes down to my friends, is that everyone’s gonna be QUITE ALL RIGHT!”
My fellow gals, you are sick and you’re pretty, you are beautiful and divine, own that acne, own that messy hair, YOU ARE SEXY AS HELL.
I follow the Memes for Jesus page. One time I actually messaged them and got no response.
Recently I thought of a meme about PKs, or preachers kids. Often times in the comments of the Instagram page people seem to have the idea that the PK does whatever they want. That wasn’t my experience.
My idea was that PKs on the inside were the song Reflection from Mulan. In the song, Mulan expresses sadness and anxiety for perceiving to not live up to her family’s expectations. Generally all PKs I know are balls of perfectionism and anxiety, whether they end up functional or heroin addicts, Christian or otherwise. This is a mix of expectations from their parents congregation and expectations of their parents to be perfect examples of Jesus to the community.
I still grapple much with my upbringing and my faith. There’s a lot I wish were different, but you do the best you can with what you have.
Sometimes all you have is six chords and the truth or a bible and your tears, and that’s enough.
Whatever enough for you is, know that you are worthy, no matter who your mother or your daddy was.
Since my fibromyalgia diagnosis, many terrible things have happened.
I’ve lost my job, I’ve lost most of my friends, I’ve lost my apartment and two cars. But I’ve found I’ve gained a lot, too.
I may have lost my mind but my heart’s come on pretty strong. The things I’ve loved have never left me. My closest friends are still here, as is my family and fiancé, no matter how many times I go Dr. Jekyll/Mr. Hyde at them.
My dream of going to graduate school came true. I read all the time; it’s my biggest solace. There is yoga every morning, a dog in my lap, a sketchbook on the table, a notebook in my purse, my collection of odd lipstick and my wearable glitter. I have, honestly, gone out in green lipstick and glitter on my face to the falafel stand. My fiancé has agreed to help me dye my hair purple after our wedding.
The love is all still there. It never went any where. It just takes some eyes to see it.
This love is what makes living with chronic illness possible. The yoga, the dog, the glitter, and the books are all coping mechanisms that help me block out the pain. Without me I would live in a rainbow free world in black in white where all I could feel is sorrow.
So when you see the things that bring you joy, take a little snapshot in your mind. Let the world know how grateful you are for dogs and books and glitter. Be annoying about your love. Let it overflow, because without it there is desolation.
This is how fibromyalgia brought me back to myself after a huge disconnect of trying to fit into corporate America and “the man.” I was forced to listen to no one but myself to live my life.
Is this a positive? Definitely yes.
Let the love flow through you, y’all.
And now, a recap:
Pocket full of starlight: all the positives in my life are all still there and some have come back to me in the wake of my illness.
Pocket full of darkness: my computer crashes every 5 minutes so all my posts are written on a smartphone. That’s why this sounds like this was written by an 11 year old.