I Want to be a Survivor, Not a Victim

lionness in the serengetti next to a tree  overlay text "I want to be a survivor, not a victim. My perspective on having internal power. spoonielifestyle.com"

Last night something scary happened. I had a two-hour-long panic attack. My mind’s eye kept reminding me of all the hellish states my life was in. My horrible, love-hate marriage. The crippling physical pain I experience every day. Coming to grips with my identity as someone who is sick, but only kinda sick, yet still hasn’t worked in two years.

Maybe this doesn’t sound like a nightmare to most people and that’s because I’ve redacted most of the information. I’m a pretty open book, but on this blog I still have to censor myself. My marriage is in a hell hole. Partially the hole is that my husband and I haven’t slept in the same room consistently since our second week of marriage. It sucks. It’s scary. I acknowledge that I write about this relationship in a very lovey-dovey way and then swing back around to clobber it with a hammer, and that’s just the way it is – it’s the most bipolar, pardon my french, young marriage you can have without signing on the dotted line to separate forever.

I still have hope it can be recovered, as I am in survival mode and can’t afford to think of the alternatives. What does a failed marriage say about me? What does it mean when it is such a young marriage? How will I keep myself away from my dad when he tells me I have lost the right to marry again? All of these thoughts and real-life conversations swirl over me in the night.

Then as a ghostly specter, my husband comes crashing through the guest bedroom where I basically hide/live with the door locked, and lodges a pitchfork through my chest. I wake up screaming. Where am I? How did I get here?

Not to mention my entire body is burning and I am numb in my hands. The dull ache in my shoulders is a good sign – it’s there but nothing to report back on. Then comes the migraine, then comes me texting all my friends in the dead of the night. The good ones text back.

At this point, I have had about 2 hours of sleep.

I don’t believe in victim mentality, but what what do you call yourself when you’re a constant target living in fear? Right now I aim for surviving in this environment until I can say, “That was the old me. That doesn’t happen anymore. We don’t live there anymore. We don’t talk to ourselves like that. I survived that. I am not a victim. I am a survivor.”

Let’s unpack these terms “victim” and “survivor.”

You can be a “survivor” still living in a “victim” situation. Likewise, the reverse is true.

Survivors are focused on tasks. They know what to watch for, have safety plans, battle plans, and self-care plans. I’ll refer you to this article on self-care for some ideas to pick and choose. The biggest thing is you maintain hope and a sense of self by keeping a tiny part of your soul in a pocket for only you to see. This could be something like a favorite book, a pocket bible, or a pocket journal that is easily accessible, hide-able, and portable.

Victims are focused on emotions and blame. They don’t necessarily pay attention to anything outside of their reptilian feelings and like to play the blame game – and that includes placing blame on themselves, thus engaging in the martyr game. There is no interaction with themselves, the situation, or their environment. The key difference is no self-introduced catalyst for care AKA change.

Victims beat themselves up. Survivors approach themselves with kindness and self-love.

So, today I’m going to be a survivor. If I find myself in Victimland, I’ll gently guide myself out and kindly figure out what to do about my situation, even if it’s something internal. Today I hope you are all survivors.

Fighting the She-Wolf: Fibromyalgia Painger Coping Techniques From a Weird Hippie

I had a great day today, filled with productivity, intimacy with my fiancé Bear, a side quest to find cake balls, and the two of us pretty much telling my parents I was moving in. They took it as well as you could expect a preacher and his wife could.

Bear and I celebrated all night long until it was bedtime. I was sure that my alter ego, the She-Wolf, would not appear as I had such a wonderful day. I was wrong.

What is the She-Wolf?

The She-Wolf is an irrational, bitter, negative version of myself that exists around sunset til 12pm the following day. Symptoms of lycanthropy include extreme anxiety, nervous chittering, catastrophizing, only seeing negative outcomes, thinking someone said horrible things, general paranoia and moodiness.

My mother coined the term lycanthropy two days before Bear and I initiated operation secret move out and called me a She-Wolf. As a Technical Writing major I wrote an actual step by step procedure on how Bear could deal with me as a She-Wolf. Becoming a She-Wolf with the onset of fibromyalgia pain worsening in the evening and realizing this made me and Bear realize I needed to book it out of the ‘rents place.

The She-Wolf Does Not Rest

As previously mentioned today was great, and I was not symptomatic at 5:30 as usual. She-Wolf didn’t come barging in until 10:30 and Bear and I were trying to sleep.

In Bear and I’s house we each have separate office spaces. Mine contained a new order of books, one of which was Heal Your Body by Louise Hay. I previously read You Can Heal Your Life by her and thought it was fascinating, a new viewpoint I had never heard before.

Hay’s book contains a diagnostic list of diseases and affirmations to be recited in a mirror. I went through and said anything that applied in the mirror by my desk and I felt She-Wolf backing off. This took about 30 minutes.

Next I brewed some chamomile tea and tried to softly sing a song in our kitchen. I drank it and went through the affirmations again after becoming thoroughly depressed while reading Being Well When We’re Ill by the theologian Marva Dawn. I’m sure I’ll sink my teeth into it later but when the She-Wolf is rising I need something fluffier. I think I need an All the Shit I Am Reading post soon.

Finally, I used my green aventurine stone and did a two minute meditation after playing with my crystals.

I felt safe enough to go back into the bedroom, but the She-Wolf came back after my rib cage cried out upon lying down.

I am back in my office and have just recited the same affirmations from Hay. This seems to be a rinse, lather, repeat thing. At least it keeps my She-Wolf away. But my lack of sleep is here. However, I felt a storm blow in so that may amount to something too.

My Identity Outside Chronic Illness: Simple Vanilla Cake

I’ve begun doing affirmations in the morning and evening. Finally, for the first time in weeks, I was able to do a yoga routine yesterday morning. The happy feelers were abuzz and I knew the sun was shining on me. I was absolutely not going to waste this gift of a day sulking in bed or in my armchair. Today I was going to create.

Today I was going to do something I truly loved.

I have been a vegan for 8 years. During college and my single years I would bake intricate vegan recipes and deliver them to churches and other charitable events. As I baked this cake I planned my married baker gal goals in my new house in my new neighborhood. Before my illness I baked too much to eat everything myself. Recent news of my gallbladder means I really shouldn’t eat much baked goods, so I’m researching organizations in my new area that could use an ever loving Spoonie full.

Without further adieu, may I present the debutante:

Simple Vanilla Vegan Cake

Ingredients

1 1/2 cups all purpose flour

1 cup turbinado

1/2 tsp salt

2 Tbsp rice vinegar

1/2 cup vegetable oil

1 Tbsp vanilla extract

2 Tbsp confectioner’s sugar

Directions

Preheat oven to 350 degrees.

Combine dry ingredients in a bowl and stir in the wet. I used an old hand mixer from the 1950s I picked up at a thrift store.

Pour into a greased 8”x 8” pan and bake for 30 minutes.

Remove and cool for 15 minutes. Sprinkle confectioner’s sugar lightly with a spoon as seen in the picture. Optional: top with blueberries and a mint leaf.

This was adapted from I Can You Can Vegan. I didn’t have all the ingredients, so I improvised. It turned out tasting a little bit like funnel cake. If you have Coco Whip available to you, it could also make a great topping instead of the confectioner’s sugar. The texture was spongy and this would be great piled high with plenty of fruit!

So, my fellow Chronic Illness Warriors, happy baking!

Coming Back to Yourself

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.

My Fibromyalgia Book List: The Fibro Book Club

It’s been a little while since I posted. Generally I’ve been a molten lava monster experiencing an existential crisis. Thankfully I found a book that helped: You Can Heal Your Life by Louise Hay.

I discovered this book by picking my chiropractor’s brain, a chiropractic doctor whose intelligence I respect, who showed me multiple books. My acupuncturist has also recommended a few books to me, and I have asked my fiancé, whose mother is a pharmacist, for recommendations. From now on, if I have the chance, I will ask my doctors for book recommendations.

Let’s return to You Can Heal Your Life.

The book largely focuses on mirror work and self-empowerment for physical and mental ailments. At first I was skeptical, but looking back on it I appreciated the idea of putting power back into an ill persons hands. The idea of mental wellness through an illness certainly can’t hurt. But the idea that it can cure cancer does. However I don’t think this is what Hay is arguing.

In order for her arguments to work, adopting her New Age worldview outlined in the beginning of the book is necessary. As someone who has more of that bent, this was easier for me to do than some. I like the idea of us choosing our parents and them choosing us. It’s a healing concept. Empowering.

Generally after my health downturn I have felt I have had no power. Power of the mind can be cultivated in any situation, which is why I have developed my fibro book list:

Just read:

– Herbal Medicine for Beginners

In the mail:

– Gray’s Anatomy

– Chinese Herbal Medicine: Materia Medica

– Heal Your Body

– Clinical Pharmacology Made Ridiculously Simple

– Medical Medium

– Stedman’s Medical Dictionary

– Why We Sleep

I recommend ordering your books off of Thriftbooks with a coupon code from Retailmenot. It’s cheaper than Amazon. Half Price Books is great too, but they don’t always have the selection.

After believing I was screwed over by the medical system, I realized I knew nothing about my own physiology. I wanted to order some books about the human body and make me more knowledgeable in my communication and what I put into my body.

There are a few books about herbalism. My fiancé’s family have been botanists for generations and he is a plant enthusiast. As someone leaning towards holistic medicine and wanting internal power, I wanted a hobby we could share together. Connecting through herbal medicine seemed like a good way to cultivate our marriage. Please note I do not reject western medicine.

I still read fun books, like The Sight, which is like badly written Game of Thrones with wolves. When I’m trying to relax this is what I read.

So, my fellow spoonies: what Spoonie related books do you read? I would love to know!

How Acknowledging the Good and Bad Helped Me Cope With Fibromyalgia

Have you ever been told “focus on the positive, eliminate the negative?” Do you have a problem following through on that advice?

That saying is almost like trying to ignore a tree that fell through your roof and now it’s raining. It’s also freezing outside, and outside is now inside your house. How are you to ignore the hole in your roof, the tree blocking your way, the rain on your floor, and the freezing temperatures, while somehow making it go away by focusing on the fact that at least the tree didn’t land in the master bedroom?

This is how I often felt when people told me to focus on the positive when I expressed being in pain after my fibromyalgia diagnosis, or the years of suffering leading up to it. I believed I had to acknowledge my suffering as well as the happy parts of my life in order to be productive.

After all, how are you supposed to get out of the freezing rain and turn your house warm and cozy again if you cannot admit that a tree fell through your roof? No one wants a hole in their roof caused by a fallen tree, but if it is ignored, it cannot be helped.

Growing up, I often felt deep emotions. Soaring happiness, rapid excitement, hollow darkness, and deep sadness. I had the entire spectrum of feeling. Usually, no matter the situation, I had complex emotions that confused me. At my grandfather’s funeral, I attempted to help serve food, set up tables, and had no idea I was supposed to sit with my grandmother. Her sisters were there, and as she never saw them, I thought they would be a bigger comfort to her than me. As someone who frequently helps at funerals, I had only rarely been part of the grieving family to be supported. I did not cry when my grandfather died, even though I missed him and loved him. The night before his funeral, I saw a silvery image of him come to hug me as I tried to fall asleep. My grieving process is still going on, and he died five years ago when I graduated college. After the initial numbness passed, I was greeted by regret, anger, and questioning.

This is just an example of how I experience emotions. Another is disaster planning. I have a bad habit for looking at a situation, seeing what could go wrong, and planning for the worst proactively. It’s not an entirely bad trait. But sometimes I will be excited about an idea, will have already run my disaster planning algorithm through it, only for my mother to shoot it down with extremely shallow disaster planning that was, well, preschool disaster planning, telling me I don’t think through things and proceed to forbid or simply kill my vibe. If I’m honest I think the fact that I am expressive and have more of an emotional ecosystem than my parents lead me to believe they think I cannot be rational, so when I am excited, I must have a bad idea.

The truth is, we all have emotions. Some people simply wear masks, like my parents. I am a bit too honest for facades and my feelings give me intuition that I operate out of. It also gives me a holistic approach to situations.

Growing up and today, disaster planning while feeling a positive emotion and not experiencing a total eclipse of the heart when tragedy happened prepared me (somewhat) for my fibromyalgia diagnosis.

When I was first diagnosed, I knew that not everything made sense. I fought for answers, found community, and researched coping skills. My previous posts outline some of these.

However, my greatest teacher for managing fibromyalgia is the yin-and-yang concept.

There is some good in the bad and some bad in the good. The light side and the dark side complete the whole.

Basically, imagine walking into a lit room with a couch in it. The light casts shadows in the room and on the couch you go to sit on.

Your depth perception as you walk to the couch and how you see the couch would be way off if you couldn’t see the light or the shadow. You may not possibly be able to make it to the couch!

When it comes to chronic illness and chronic pain, it is ridiculous to ignore our suffering. However we will not make it out alive by merely focusing on the shadows.

This is why I typically end each post with “pocket full of starlight” and “pocket full of darkness.”

With that said, a recap:

Pocket full of starlight: darkness has a friend, it’s name is light, and they rely on each other. For every pain you feel there is something lingering within waiting to shine on you.

Pocket full of darkness: in order to take the good, you must take the bad. Sometimes even with all the disaster planning in the world we cannot avoid disasters.

Linguistics, Identities, Marginality, and Chronic Illness

Recently I had a class in which I looked stupid. This is normal for most people but as an introvert who hung out in the back of the class in class sizes of 300 people I usually didn’t have to talk, being put in the spotlight was never something I was used to. I am a graduate student now and my average class size is 10.

My class centered around interviewing the author of a social justice work book we read for the course, and I was very excited. I loved the book, and as someone who was a communicator for a church and trying to empower women and people in general in the chronically ill community, I had a lot of questions for her.

I am not articulate, so I wrote my questions down in advance. It had been a while since I finished reading the book and I wrote my questions that day so this was my likely faux pas. My questions to her centered around racial and gender identities and how they related to chronic illness and disabilities. I explained I was working on trying to make a positive difference with a somewhat girly chronic illness blog about personal identity, self advocacy, and empowerment. The author retorted that tutorials on how to look pretty for doctors appointments and individual activism was not how we overcome systematic injustice.

I have a few thoughts here. First, it is correct that individual activism is not how the chronically ill and disabled overcome systematic injustice. We must all share our stories honestly and openly with bravery. This is how we can seek each other out and join forces. However, I do not write tutorials on how to look pretty for doctors appointments. This blog does not exist to make a chronically ill or disabled woman conform to societies standards, it is to help her remember and have her feminine identity, if she identifies as feminine, be accessible within her new body. It exists to let those with real physical pain and limitations know they can still express themselves, just with some changes, and still accept themselves whether they have a buzz cut or want to learn how to maintain their hair that they love (not that society loves).

A diagnosis or disability is a traumatic life event that can make a person feel as if it is their only identity. I did not feel I had the time during class to explain that many chronically ill and disabled women wish to maintain who they feel they truly are after their diagnoses.

During the class I mentioned that it felt strange to me that I had to identify, or claim my identity as, a chronically ill person. I explained that I knew I had to use this language in order to find others like me to join forces and educate, and I believed it was the English language that forced me to use these labels. I also feel it is the medical system being controlled by pharmaceutical and insurance companies that pushes me into labeling talk and a lack of holistic care. I have noticed that other countries with other languages and cultures have different ways of seeing and talking about people of different abilities, genders, illnesses, and sexuality.

I know from a sociological standpoint an identity is not the personal identity from a more psychological standpoint I work from on this blog. Here I try to provide avenues to deal with the trauma of an illness. Even if society were different, the physical ramifications of illness and the emotions that come with them are things that no one outside of the group understands, even advocates. This is not something often talked about: trauma, self esteem, feeling worthy of accessible spaces and healthcare.

This large part is crucial to social change because in order to have change the community must be united. Within the chronically ill, mentally ill, and disabled communities, people are prejudiced against one another within their own groups and there is a lack of unity. People finding worth and confidence in themselves may help them find the same for their fellows. Their paths and struggles may hopefully produce the understanding needed to lift each other up.

This is just my theory. Feel free to disagree.

My Fight Against Bias in Medicine: How to Fight the Medical System like a Businesswoman and Gain the Respect of Your Doctors in the United States

Yesterday I went to a neurologist at a research hospital about an hour and thirty minutes away from home.
They specialized in Multiple Sclerosis, which I knew I didn’t have, but I was desperate to see this neurologist.

Back in July 2019, I woke up screaming and writhing in pain. All I could do was lay in bed while my fiancé fed me by hand and covered me in ice packs and microwaved towels. Eventually I was taken to an urgent care where I was told I could have nerve damage and needed to see a neurologist and rheumatologist. Thankfully, they told me I was not a liar and I was clearly in pain, but they could not give me pain medication.

I waited five days to go to urgent care. This was because I had been unemployed for eight months due to not being able to receive proper medical care for my gastrointestinal problems which I had believed morphed into widespread pain. What really happened was I was now aware of the pain. I had always had very high pain tolerance. The truth was I had been in pain for years while I was vomiting daily, but once the vomiting stopped for a minute, I felt the ruins of my body cave in. So, this paragraph is to say, I was out of money and begging for it from my family, who was 12 hours away, did not believe I could be that sick at age 26, and after five days of phone calls and my fiancé also pleading with my parents, I was allotted $100 dollars to go to an urgent care. I spent all of it on one appointment.

Let’s talk about the years I spent not receiving proper gastrointestinal care. At the time, I was a pretty, slender, blonde young woman with a fake tan who dressed to the nines everywhere she went, including the doctor. My health was not as bad as it was now, but things were still bad. I always went to older male doctors. I am not saying all  older male doctors are bad doctors for women, as some female doctors can be prejudiced against their female patients. In fact, most doctors are biased against women, especially women of color.

John Oliver does a great, sad, and humorous job of explaining bias in medicine in his video. It’s sad because it’s true, and it’s funny because of the delivery.

In the video, John Oliver suggests bringing a white man along with you if you need help. This is actually true, as I have brought my fiancé with me to some doctors appointment. However, he is a sweet little engineer, and works very hard around the clock. This means I don’t often get my white man to speak up for me. I’ve included a few tips on how to speak up for yourself.

Patient Advocacy: How to Talk to Your Doctor

  1. Purchase a cheap tablet off of Amazon

No, I am not endorsed by Amazon to advertise for them. However as someone with a chronic illness I find their evil empire useful, as I can use Alexa (something I don’t have) or my smartphone (something I’m on all the time) to order anything I need. Ease and convenience is key for a spoonie when we need to hunker down and get some stuff done. Please note, you do not need an iPad. I bought my Amazon Fire tablet for $40, and it’s a gem.

  • Use your cheap tablet to create PowerPoints for each and every doctors appointment.

For each appointment, put the name of the doctor, their specialty, and date. You can copy PowerPoints to create others. Include complaints, symptoms, updates from all of your other doctors whether you believe they are related to this doctor or not, questions, a medication and supplement list, and thank-yous (if you have any). Important: create a slide full of things you are doing to help yourself mentally, physically, and emotionally, such as meditation, exercise, hobbies, and social activities.

Find a funny pain scale graphic to include in the PowerPoint to refer to. Doctors like patients who have a sense of humor.

Create these for every specialist you have, from your talk therapist, psychiatrists, rheumatologist, neurologist, dermatologist, family doctor, gastroenterologist, and OBGYN. Anybody. It will help guide the conversation, fight brain fog, and ultimately make you appear intelligent, organized, and worthy of respect.

  • Once you have acquired the tablet and created the PowerPoint, go the appointment and each time you are there hand the tablet to the doctor.

If you say “I have made a PowerPoint I want you to look at,” you doctor may be confused. Instead, say, “Please look at my tablet. I have prepared a PowerPoint with medical information for you to look at to help our communication and for you to better understand my case.”

Tell the doctor it is okay for them to hold the tablet, or you can set it on a flat surface to scroll through the PowerPoint with them. Tell them to ask you questions as they read.

2. Obtain and create a medical records binder. Take it to each appointment.

This is the hardest part. Some doctors will charge you through the nose to get your own information. The best thing to do is at the end of every appointment, to ask for a write-up of each appointment. Contact the labs where you get your work done and get copies of your lab work. Put it in the binder. Get hard copies of your radiology. To do this go directly to the imaging centers. Gathering your records will take the longest amount of time and many phone calls, but it is worth it. You never know when a doctor will doubt you on the spot about a condition you have in the room and you will need your binder of truth, your sword of justice, to whack some sense into them.

Please note that not all doctors charge money for records.

 How My Tablet and Medical PowerPoints Saved Me

On the Amazon Fire Tablet, Amazon has a Doc app native to the tablet, where I make my PowerPoints. Note that I do not make them fancy. Please do not make your medical PowerPoints fancy, it takes too much time.

I had a copy of a rheumatologist PowerPoint that I was editing. It had been months and I still could not find a neurologist on my insurance. Everywhere I called said they would not take my case. A friend suggested I try the medical school. Perhaps I wasn’t clear on the phone, but each receptionist I talked to there gave me a different answer. I decided to email the Dean of Neurology one of my Medical PowerPoints hand tailored to communicate with the medical school, including the slides I outlined above.

Not expecting a response, I worked on school and general life things. Surprisingly I received an email from a physician’s assistant at the school, saying there was a neurologist interested in my case who had seen the PowerPoint. I just needed to fax over my medical records.

Because I had my exhaustive binder, I merely faxed over copies of my medical records binder. I had an appointment in a week.

Other Tips for Communicating With Your Doctor

If You Do Anything But Be Sick, Mention It!

When you have a chronic illness, it’s important to build positive rapport with your doctor. This is because you will be seeing each other a lot! Do you have a dog? Do you write? Do you blog? If you do blog, don’t mention the name. Do you collect cat pictures or memes? Did you have a spa day? Are you in school? Did you get a good grade on something? Anything positive that you do, mention it. Doctors are surrounded by negativity. Please understand that I am not saying to not tell your doctor what is wrong with you. That’s the reason you’re there. Just add some glitter to the appointment. Bring some tinsel but don’t get your tinsel in a tangle!

Do Not Look Pretty for Doctors Appointments

There’s a fine line here. Wear clean, unwrinkled clothes if you can, but do not do your makeup. Make your hair reasonable if you can. Do not wear full makeup. I made the mistake of looking my full fancy self when I first started my journey and the doctors could not see the beginnings of my illness through all the contouring and bronzer.

Of course, if you’re coming from work, you may not be able to help this. That’s okay.

I hope this  helps some of you.

Now, a recap:

Pocket full of starlight: thanks to technology, there are some ways to fight the system.

Pocket full of darkness: why should anyone have to fight so hard to be seen and heard?

Style for Spoonies

Style for Spoonies

Please note that this post is intended for personal empowerment, not to push anyone into a mold. Style does not equal fashion, as will be discussed later in this post.

My goal is to let everyone know there are parts of themselves they can still have fun with, even with chronic illness. I hope I do not miss the mark.

I am a certified Girly Girl ™ and Chronic Illness Warrior Queen. It is my duty as a feminine chronic illness warrior to have some fun and write about something that tickles my fancy, which is how to develop a personal style post-diagnosis.

What is style, and what does it have to do with chronic illness?

Paste Magazine outlines style as a sort of essence or tone  to a person or thing, like food or writing. When a person becomes chronically ill, it is easy to lose their essence. So much of how daily life is lived must be changed. Everything from food, speech, walking to clothing choices must differ due to health conditions. But the essence of who a chronic illness warrior is, who you may be, dear reader – must not change. It must adapt.

Why should people with chronic illnesses care about style?

Firstly, a person with a chronic illness does not have to care about or prioritize style! I certainly don’t 5 out of 7 days out of most weeks. 5 days is a good week. However, when I do have the spoons to waste on style, I do feel better, and I am all about feeling better. I would like to make other chronic illness warriors feel better too. If you, as a person with a chronic illness, believe you would benefit from a silly cathartic article written about style for spoonies, please read on.

Types of Spoonie Style

The Lounger

If you are a certified pajama queen and live strictly for comfort, go you! You are putting your health first. This is good! No need to feel shame here, spoonie fashionista.

The Yoga Pants

There’s a lot of fun you can have with yoga pants. Yoga pants are basically the new blue jean. Once again, you’re practically street style honey.

The Leggings and Flowy Shirts

This is a definite style many musicians and bohemian ladies rock. Nothing to be ashamed of here, my chronic illness warrior princesses.

The Big Dresses

I don’t know if it’s just me, but hey soul sister if you’re reading this! Do you suffer from rib cage pain? Is your stomach and lower body in too much pain for yoga pants or leggings? Welcome to the Dress Mess tribe!

Everybody Else

Of course, this list is not exhaustive. There is no one way to describe the many ways women with chronic illness dress, and it’s usually function over form. This post aims to put a little form to the function, acknowledging form is less important than function, but can be used at times to add some style, or fun, AKA essence.

The Fab Fibromyalgia: My Chronic Illness Makeover

Exhibit A: Myself, the Spoonie Bard.

I had always been into rockabilly and retro fashion, a bit of a throwback if you will. My street style had always been a bit dark, glittery and rock and roll. Lipstick was always my cosmetic of choice as I had eye allergies.

Before my illness, I wore ripped cutoff booty shorts, complicated lace and tulle black structured blouses tight under the bust, combat boots, dark wash skinny jeans, a full face of makeup, thrifted motorcycle jackets, clear contacts, and a short pixie haircut I blow dried with a hair dryer and straightened with a flat iron every day. Each morning I showered, shaved, and applied fake tanning lotion. My hair was always colored.

At the core of my look was an essence, or style: edgy that said “I’m here. You can see me and judge me immediately so my anxious mind won’t go on a worry trail imagining all the mean things you’re saying in your head. I know you’re noticing the purple hair, the fake bake, the eyeliner, and the combat boots.”

Now, let’s look at me after  chronic illness.

After chronic illness: pixie haircut styled naturally curly or straight with a hot air brush, natural brunette hair color, tortoiseshell vintage cats eye glasses, loose fitting T-Shirt dresses in darker colors from Old Navy, vest cardigans, tall chestnut riding boots, ASICS sneakers, grandpa sweaters, an investment black pleather Guess jacket with gold details, knit polka dot dresses and shirts, flowy knee length skirts, and a bold lipstick color. I am currently pale as a ghost and hairy as a horse.

The current essence screams 1950s librarian to me. A librarian that one day, in January, hopes to have purple hair again. Still, it’s different – wearing my hair curly makes me look like I have hair from the 1920s and barely an inch long. The call of “look at me so I know you are first” still stands. I still have an essence, even if I can’t wear pants anymore. Despite chronic illness, I still have a style.

How to Develop a Style After Diagnosis

  1. Decide what you want to say when you enter a room

Is it “You saw me first and I know what you thought?” Are you daring and bold in this manner?

If so, experiment with a bold lip color or eye shadow. Which one of these you choose depends on if you have eye problems like I do (I suffer from ocular migraines and every allergen imaginable).

If you want to tell someone you are glamorous, invest or thrift for good accessories. A luxury handbag, jacket, jewelry piece or scarf can go a long way to dressing up yoga pants and a T-shirt.

2. How trendy are you?

And, generally speaking from experience… Trendy clothes are far less comfortable.

This determines what era you’ll set yourself in, and how up-to-date on fashion trends you’ll be. It also helps determine a budget, because if you’re trendy, you have to buy clothes more often!

Going for a more classic, timeless style means buying less clothes over time, unless you suffer from body fluctuations like me. However, generally knowing what you like makes it easier to shop online or at a thrift store once you know whether you’re more dramatic or low key.

Trendy vs. classic helps determine what type of fabrics you buy. I like to thrift for Old Navy knit dresses. These are rayon cotton or jersey knit dresses with a polyester blend. Generally I find these fabrics are gentler on my skin than the tulle or lace I used to wear. I aim for different patterns and polka dots in different colors. However I am a polka dot and not a stripe, and you may be a stripe; do as you wish girl.

Always choose fabric over looks. That sequin shirt is going to really rub you sore. But I guarantee you a jersey knit top with the right pattern or embellishments that do not stick up will treat you right.

3. What are your limitations, and can you have fun with them?

Do you use a mobility aid? Do you need to wear glasses? To wear pants or not to wear pants? Can you only wear pants?

If you use a mobility aid such as a cane, consider something elegant or antique if you’re female. To find one of these, I suggest eBay. I recommend The Disabled Diva’s Six Stylish Canes to Keep You On Your Feet for more direct references. If you’re partial to Ireland or Irish folklore, I once used a shillelagh as a mobility aid. They are available on Amazon.

As for glasses being trendy these days, there are so many options to appear on point. I prefer cat eye because they make me look more sophisticated and slim my face, and I cannot wear contact lenses. Now I will refer you to Zenni for an affordable range of glasses frames to help you find the right pair. On Zenni you can upload a photo of yourself and do a virtual try-on.

Assess whether you can wear pants. Pants are a nope, even leggings and yoga pants in my case. I can wear yoga pants around the house, but I can’t even go out my front door to get the mail. However, if you pants the pants, you pants the pants, and this is well and good. Pants the pants.

I am not anti-yoga pants or leggings by any means, however, I cannot personally wear them. I do know that folx that can wear jeans should check out Maurices. They are the only jeans I can wear when the temperatures drop waaay down low. Maurices comes in a wide range of sizes, are incredibly soft, and do not press on my hips to aggravate endometriosis pain.

Do you need to wear sunglasses? A spoonie guy or gal can really have fun with this. Designer sunglasses or sunglasses that look like a million bucks for cheap off of Zenni to create an ensemble can really help create a wardrobe in and of itself.

4. What is your hair texture, and how can you live with it naturally?

I recommend going to a highly rated barber shop in your area for help in regards to this matter if you need a haircut. Curly and wavy hair can look good short in the hands of a skilled barber even if you are a female spoonie. It’s also easier to take care of. Be sure to pay attention to how they style it at the barbershop and ask questions, such as “What are drug store dupes for this product?” if and when they try to sell you a salon product. Be persistent if they try to tell you there aren’t any. Believe me, there are.

In general I am more in favor of short hair for female chronic illness warriors because it is less likely to become matted in the unfortunate event of poor hygiene. If you find yourself going a few days without a shower and aren’t getting second or third day hair, beanies and other cute hats are your friend.

For tips on how to care for your hair with a chronic illness, check out my post, The Spoonie Girl’s Guide to Personal Care. These are good tips for men and non-gender conforming as well.

Conclusion

It is possible to cultivate a personal style post diagnosis if a spoonie so wishes, but it should not be expected nor should it be prioritized. I wrote this for fun as a silly girl post, though folx not identifying as girls are welcome to use this as well.

Now, a recap:

Pocket full of starlight: You can have fun with your spoons if you so wish.

Pocket full of darkness: Fun costs spoons.

Use your spoons wisely!