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Hey, it’s Leah of Spoon Shares. I started a vlog series about feeding tubes about 2 years ago, and did about 4 videos over 6 months before I stopped because…I didn’t have the energy and I kept putting it off. So now it’s two years later, and I’ve somehow still gotten some really nice comments and subscribers, despite the fact that I haven’t posted in two years, so I’m going to make an effort to start these videos again. I no longer have a feeding tube, I had to switch to TPN, which is IV nutrition through a central line, but I will still talk about my experiences with the feeding tube as well as TPN. And I’ll talk about other chronic illness related stuff, either stuff I’ve learned living as a professional patient that I think may benefit someone to hear, or stuff to help you explain a difficult concept to friends or family members. I’m not going to try and do one a week like I tried last time, because I know better now. But I will do what I can. And that I think brings me to the topic of this video, which seems a good place to re-boot this vlog series: productivity.

Productivity with chronic illness is hard. No matter what level of functionality you have, you know it’s not as high as it would be if you weren’t sick. And that’s really frustrating. And because our society is so productivity based (think of how often we hear the phrase “productive member of society”) it can feel like you’re a useless drain on the resources of those around you.

So in order to cope with that feeling of doing less than you would like to do, whether it’s because you need more days off or because you can only work part time, or because, like me, you can’t work at all, you have to throw out that “productive member of society” narrative from your world completely. Just chuck it out the moon door along with Lysa Arran (spoilers). 

Instead, think about the people you value in your life. Your friends, your family, your significant other, your furry pets. Now, do you value them because of what they do and what they create, or because of who they are? Creating stuff is awesome, don’t get me wrong, and part of the reason I knit so much (I knit a lot guys) is to feel like I am adding things tangibly to my world. Also because it’s a great way to cope with symptoms while stuck in bed. But it doesn’t define your worth as a person.

So go easy on yourself, and remind yourself that you’re living in a body that makes even the most simple tasks feel Herculean. And when you’re beating yourself up for not being able to do something because of symptoms, remember this sentence a friend said to me when I had a migraine flare when trying to get ready for a friend’s wedding: “You will do what you can do, and whatever that looks like will be okay.”

The post Vlog: When Chronic Illness Gets in the Way of Productivity appeared first on Spoon Shares.

Well, a few hours after I promoted that post on social media, I got the sweetest email from their social media coordinator.

Reader, fellow spoonie, I cannot tell you how much this made my day. I really have quite a modest social media following, so this representative taking the time to single me out was pretty awesome. As a disabled person who is unable to work and had to drop out of school, it’s really rewarding to have someone take notice of the small amount of work I am able to do.

True to her word, my new BFF Victoria sent me this fantastic free pair of jeans, adorably wrapped…

With the sweetest note.

And you know what? These pants are amazing. The letter said they were designed to feel soft as sweat pants, and they really do. My mom has already tried to steal them.

Of course, it took me a few months to actually getting around to taking the pictures and writing this blog. Because, well, chronic illness whatnot.

But I have been wearing these pants consistently since they were sent to me, and truly and whole-heartedly suggest them to anyone, bloating issues or otherwise, who needs a discreet but expandable waistband.

The style of the pants they sent me is called Nora Skinny, but they also have less form fitting styles in many different colors. I’m not positive if they all use the same soft “freedom knit denim” as the ones I was sent. But I have been wearing Jag Jeans for a while now, and they’re all very comfortable.

It really makes a huge difference to have pants that expand with my volatile stomach. Just one less thing to worry about when I venture out of the house. And it came with an ego boost to boot! Thanks Victoria from Simply Blue, you made this spoonie’s day.

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post Jag Jeans Part 2: These Guys Are Awesome appeared first on Spoon Shares.

Here’s what I do to make sure I can eat safely in a rented kitchen.

It starts before you leave, really. You’ll want to bring some (dish) towels to make sure you’ve got something that’s gluten-free to clean up with in the first place. If the place you’re renting comes with linen included, make sure it’s cleaned by a dry cleaners, because they put everything in sealed plastic bags. The last thing you want is finding those clean towels sitting on the worktops in the kitchen when you walk in.

Also, bring a sample size bottle of the dish soap you use at home, that way you know it’s gluten-free & hasn’t been touched by loads of people who just had a sandwich before they did the dishes. Bring some small containers with salt, herbs, & spices if you plan on using those.

Check out what shops there are at your destination, they probably have an online delivery service so you can see what brands they sell. Either go shopping after you arrive or have some gluten-free staples delivered.

You’ll also want to try & bring a small cutting board from home as well (a light plastic one that fits in your suitcase should do the trick). Plastic cutting boards don’t absorb gluten, but the ones in holiday rentals are always ‘thoroughly used’ to say the least. All those cuts in the plastic are the perfect place for tiny bits of gluten to hide. There’s no way you’ll be able to scrub that out (and not a way to spend your holiday anyway).

If bringing your own cutting board seems like a step too far & you’re not planning on doing much cooking while you’re away, just use a plate instead.

With all that prep work done, let’s get to what you should done once you’ve arrived.

Start by using one of the dishrags to clean the sink. This is going to be your ‘I can breathe here, it’s gluten-free’ spot for now. Use hot & soapy water. Take a new cloth & clean the counter and the hob.

It’s such a relief for me once those parts of the kitchen are safe!

Next up is cutlery, glasses, plates, pots, & pans.

Only clean what you know you’ll be using & take that out of the drawers and cupboards. Put everything in the sink (in, not next to it, that saves you more cleaning after) and use a new cloth to give it all a good scrub. Don’t put everything back in the drawers, they’re the perfect gluten hiding place. Leave everything you’ll be using (that’s probably only going to be some knives, forks & a couple of plates) on the counter.

If you’ll be using the fridge, the best thing to do is only clean the shelves you’ll be using or put towels on the shelves and put your food on there.

When you’re only going away for a couple of days

Just do the sink & put a towel on the counter to use as a safe space. You can use disposable plates & cutlery (pick an eco-friendly brand, please) to avoid scrubbing the silverware too. To be honest, I bring most of my own stuff. I’m like a very religious family all on my own, so #sorrynotsorry to everyone who’s had to put up with me showing up with my own pans.

Download the checklist here!

About the Author

Sarah Frison is an Integrative Nutrition Health Coach. She has had gluten intolerance, dysautonomia & gastroparesis for over 5 years now, probably even longer.  Before she was diagnosed, she was trianing to be a pastry chef. You can imagine she loved gluten! She sharse recipes, tips & tricks, and how-to guides like this one over at sarahfrison.com.

The post Eating Gluten Free in a Holiday Home appeared first on Spoon Shares.

It’s really hard to wear any sort of non-elastic pants with this issue. So I had been hard-core sweatpants-ing it everyday. Which was fine for hanging out around the house, but not so much if I wanted to go anywhere, well, normal.

Enter my hero: Jag Jeans Elastic Waist.

Once again, disclaimer. I’m not getting any endorsements from these people. I just really like them.

They look just like regular jeans, except they have a comfortable, elastic, belly bloating friendly waist band. No longer need to shop at the maternity store! They have multiple colors, styles, and you can order them off of Zappos. Free shipping, free returns, and no need to waste any spoons shopping at the store. Super spoonie friendly!

I now have two pairs of pants and one pair of shorts. It’s honestly a relief to have something that makes me look like I’m wearing normal pants without strangling my sporadically distended belly into the standard waistline.

What are your favorite bloat-friendly pants?

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Bloating Tip: Jag Jeans! appeared first on Spoon Shares.

I know I’m not alone. Many spoonies, for various reasons, have difficulty showering. Here are my tips for clean living when you are…hygienically challenged.

How to Shower Less Often

1. Use Dry Shampoo

I was not a believer in this for the longest time. I’ve always had a pretty disgustingly oily scalp, necessitating daily showers. How could adding more gunk to my hair help anything?

Enter my new hero, Batiste Dry Shampoo. 

Disclaimer: I am not receiving any endorsements from this company. But I have tried three other dry shampoos that have done absolutely nothing. And with this mighty can of mist, I can go 3-4 days sans shower without oily buildup. With my scalp, that’s saying something. I’ve already purchased it in travel size so I never have to live without it!

Important Dry Shampoo Tip: Use it every day. Even on days you don’t think you need it. This will keep the oil and gunk from building up faster.

2. Wash your hair with a clarifying shampoo

I use Eulence Volume Clarifying Shampoo, but it was recommended for my type of hair by naturallycurly.com. Using any type of clarifying shampoo, however, really knocks out the gunk to give you a good clean that’ll last for days. If you have dry ends, I recommend pairing it with a leave-in conditioner.

3. Avoid greasy hair products

Especially if you’re not going out of the house anyway, don’t put any styling goo in your hair. And if you are leaving the house, only put it in the ends of your hair. Stay free of the scalp.

4. Change your underwear daily

This seems obvious, but when you no longer distinguish between daywear and nightwear, you can forget.

Your armpits and your undergarment areas create the most smell. Keep them clean and it’ll be much longer before you start to have wavy cartoon lines form around your body.

5. Use Baby Wipes

Use these daily between your legs and under your armpits. Hey, a lot of us eat baby food, why stop there? Scented sprays also help keep the smell away. Although I’d spray your clothes instead of your body, so they don’t build on each other.

Edit: Someone helpfully posted in the comments that you shouldn’t use the wipes on your genitals directly. I mean the sweaty part between your thighs. If you use wipes on your genitals, you could get a nasty yeast infection. And you have enough problems. 

6. Keep your hair braided

For those of us with long hair, I don’t know exactly how or why this works, but I swear, keeping hair braided keeps the grease away longer. Or maybe it’s just harder to tell once it’s braided. For those with curly/wavy hair, it also helps keep its form longer, so you don’t have to style it as much. Plus, everyone knows pigtails and pajamas are the coolest look in town.

How to Make Showering Less Painful

Obviously, this will vary based on why showering is hard for you. I have dysautonomia, so hot water and standing for a while are a bad combo for me. A good tip for POTSheads is to keep the temperature of the water pretty moderate…but cold intolerance makes that fairly painful for me. Here are some other tips I’ve picked up recently.

1. Shower Chair

Oh Shower Chair, how I love thee. Let me count the ways.

I have the AquaSense Shower Seat. It’s not too expensive, fits easily in my tub, and makes showering 1050% easier (I’ve done the math). You can also sit down in the tub/shower, but it’s much easier to get back up from the shower chair than the floor, and it’s way more comfortable. Even if you don’t have an autonomic dysfunction like me, sitting through the shower just makes it much easier on your body.

2. Motivate yourself with special showering listening material

It can be hard to motivate yourself to de-stinkify when you know how much it’s going to take out of you, and you’re already tired. I save my favorite podcast especially for my showers, so I have something to look forward to that helps me drag my calorically-deficient-yet-somehow-still-pronounced ass outta bed. Save your favorite album, spotify/pandora station, audiobook, or podcast for the shower, and it will help take your mind away from how tired you are.

3. Shave and/or wash your hair separately

If there’s only so long you can take of shower time, divide and conquer. Wash your hair in the sink and shave whatever you wish to shave with an electric shaver on dry land. I also keep a chair by my sink so I can sit through my post-shower routine.

4. Choose your shower time wisely

I used to use my shower as my morning coffee, to get me started in the morning. It took me a while to realize that routine wasn’t going to work for me anymore…what can I say? I’m not always the quickest draw in the west.

I’ve now found that showering at night works best for me, because then I can rest afterwards without having to be anywhere or do anything else. It’s harder to motivate myself since I’m tired from the day, but, again, the podcast helps, and I try to plan ahead and “schedule” my shower for a day when I don’t do as much. You may find a different time of day works best for you. Experiment and find out what your body prefers!

5. Lay down/elevate your legs/rest your body parts (depending on your illness) right after the shower, even if you think you don’t need it

Even if you think you’re doing just fine, the aftermath will hit you harder if you try to keep pushing through. Know your body and your patterns, and get ahead of the post-shower crash.

Now you’ve got a battle plan, it’s into the fighting arena, soldier!

Post any bathing tips you have down below!

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Tips for Those Who Have Difficulty Showering appeared first on Spoon Shares.

Brain fog usually accompanies other pleasant symptoms that make you seek recluse in bed…which can get seriously boring. There is only so much TV a person can watch before they start to feel their eyes melting. As a lifelong bookworm, I’ve really regretted how little I’ve been able to read since I’ve been sick. It takes energy and mental wherewithal that the spoonie life just doesn’t always allow for. So I’ve discovered a few hints and tricks to allow me to read despite major brain adfkljadfaf-ness.

1. Kindle

Like all bibliophiles, I once had an unmitigated hatred of all electronic reading devices. It lead to the death of my beloved Borders! Surely, nothing can replace the look and smell of an actual book.

But the kindle allows you to adjust backlight, size, and spacing of the text so that it’s easier to read through your fog. Plus, it’s a lot lighter and easier to read while hiding under covers.

2. Young Adult Novels

Look, I love me some Austen, and I am determined to get through Infinite Jest ones of these days. But when it comes to brain blergh days? Let’s take it a little easy on ourselves, shall we? Young adult novels are much easier for your pea soup brain to comprehend, and thus much more enjoyable to read while you’re symptomatic. And some of the best books out there today are young adult novels!

Harry Potter, Hunger Games, The Book Thief, need I go on? There’s some quality reads to be had, so get crackin’!

And if you can’t find something as high quality as the aforementioned, chances are your brain mush will find something mindless and silly quite enjoyable. I just finished a mediocre book about cyborg Cinderella. It was fantastic.

3. Re-read your favorites

Your brain already knows what’s happening, so it’s half the brain work of a new read! Plus, you already know you love it. Why not experience it another time? Now, if you’ll excuse me, I’ll be scaling the Cliffs of Insanity. Again.

4. Graphic Novels

This was a pleasant surprise. Turns out, at least for my brain, the emphasis on images over text makes it much easier for a foggy head to comprehend. I recently discovered this when I decided to finally find out the whereabouts of Zuko’s mom (if you don’t know what I’m talking about, go watch Avatar Last Airbender because it’s fabulous). It was so much easier for my brain goo to comprehend a graphic story than a purely textual one. True, a lot of graphic novels are superheroes and sci-fi/fantasy stuff, but there’s graphic novels for almost every genre. Although, being the geek that I am, I’m currently reading Neil Gaiman’s Sandman series.

5. Travel Books

I find that the easiest thing to do while brain fogged is to skim books. I do it while reading blog posts all the time (sorry, favorite bloggers, it’s not you, it’s my crap autonomic system). Now, obviously, this is hard to do with a narrative book because you lose crucial plot points/details. But with travel books, you can just skim through and read the bits that catch your eye. The typical travel guide format of pictures/headers/lists/short descriptions/etc make the book super skimmable and digestable. Plus, it adds a nice element of escapism. Feeling too sick to move? Why not take a mental vacation to Scotland? Or, my favorite, Disney World.

5. Audio Books

When you’re just too tired to open your eyes, audio books are a nice respite. I, personally, can’t listen to narrative books on audio because I tune out so often, but I enjoy listening to (non-linear) non-fiction books. My favorite so far has been The Pixar Touch — but again, nerd.

Do you have any tips for reading through brain schmoog? Any favorite books you’ve read recently?

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Reading Through the Brain Shmergh — I mean Brain Fog appeared first on Spoon Shares.

…It’s three in the afternoon and you feel like you’ve been running around like crazy all day but when you look back on the day you realize you’ve actually done nothing.

…You’ve been on hold for 30 minutes and you really don’t want to lose your place in queue, but you’ve got three days of laxatives and a week worth of crap ready to come out…now…so you sigh and hang up.

…you have medical supplies stashed all over your house and it’s not at all unusual to look for your shoes and your extra cases of formula in the same place.

…your friends and family regularly list their symptoms for you assuming that you will just know what’s wrong with them.

…talking about your bodily functions is part of your everyday conversation.

…you walk into the pharmacy and they greet you by name.

…you can’t carry around a regular size purse anymore because of all the medical supplies you cart with you so you walk around with a Mary Poppins sized tote instead.

…you can’t watch medical shows without pointing out all the things that are unrealistic, and all the facts that are blatantly wrong.

…you look through your phone log and realize that phone calls to and from doctor’s offices far outnumber those to your friends.

…you self-diagnose yourself and then wait weeks, months or even years for a doctor to confirm said diagnosis.

…you’ve probably on more than one occasion seriously deliberated about how long you can get away with not showering.

Add your own in the comments!

About the Author:

Catherine is a 23 year old spoonie living just outside of Vancouver, Canada. She has gastroparesis, a feeding tube and is currently TPN dependent. She spends most of her time crocheting like the old soul that she is and blogs at Finding my Miracle.

Gifs cheekily supplied by Leah.

The post 11 Signs You’re a Spoonie appeared first on Spoon Shares.

A lot of people appreciate their sick days, taking the time to pamper themselves and binge-watch television while they get over their cold. When you’re taking sick days or rest breaks on the regular, though, the normal sick day activities get old very quickly. Plus, you’re probably dealing with something a little more intense than a case of the sniffles.

With that being said, it’s incredibly important to pay attention to what you do with your time. You’ll want to pick activities that match your various energy levels while entertaining you, distracting you from your symptoms, making you feel productive, or any other need you have at the time.

If you’re a list-maker, make a list; if you’re a talker, talk through your options with a friend or family member—however you do it, just be sure you have a list of ideas to draw from as needed.

Here’s an example of my own personal list:

No Spoons

• Snuggling
• TV
• Easy books
• Music
• Podcasts
• Reddit/Tumblr
• YouTube
• Napping

Low Spoons

• Snuggling
• Writing
• Crafts
• Art
• Video games
• Chatting online
• Reading
• Self-care/pampering

Distraction

• TV
• Writing
• Crafts
• Art
• Video games
• Chatting online
• Reddit/Tumblr
• YouTube

Productivity

• Writing
• Crafts
• Art
• Video games
• Cooking
• Small chores
• Answering emails
• To-do list items

Take some time to think about what would make your list—it’ll help you keep the boredom at bay, and keep your spirits up when you’re stuck at home. Best of all, when you’re not sure what to do with yourself, you’ll have a whole list to go to!

By the way, blogging is something I can’t recommend enough to new spoonies. It’s a great way to talk through what’s going on in your life and connect with others with similar experiences, so give it a shot if you’re so inclined.

Online Communities

A lot of spoonies feel a bit isolated, because they don’t have anyone to talk to who has first-hand experience with chronic illness. Luckily, we live in the age of the internet, which allows folks with even the rarest of illnesses connect. Online communities can help you research your symptoms/conditions, get emotional support, blow off steam, and feel less alone—so if any of this sounds good to you, get yourself to a computer and start making friends!

Tumblr

This site has a huge spoonie community, with personal blogs, humor blogs, informational blogs, and everything in between, and is a great conversational medium (think a long-form twitter). Search for the tags #spoonies, #chronic illness, as well as the name of your condition (such as #fibro, #pots, and #eds). Also check out users spooniestrong, whatshouldwecallchronicillness, and (can’t help a little self-promotion!) spoonie-living.

Twitter

This is a short-form conversational medium. Check out the same tags listed under Tumblr, and get tweeting!

Reddit

This site is more of a forum, and there are plenty of communities (subreddits) dedicated to various conditions—some more active than others. You can use the search bar at the top right of the homepage to search for posts or subreddits.

Facebook

There are bunches of spoonie communities on Facebook, so do a little searching and you’re sure to find what you’re looking for. I highly recommend “The Pillow Fort – Pillow Fighters Club,” which is a group for young spoonies with one important rule: positivity only.

Condition-specific websites /support groups

Many condition awareness websites have a forum available, and plenty of forums have been set up independently, too. Do a little searching for your condition, and you’ll find plenty of resources.

Blogs

Although standard blogs are a little more one-sided, they’re still wonderful places to get a pulse on your condition’s community and find other blogs and communities to join.

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Coping Strategies & Online Communities appeared first on Spoon Shares.

Friends and family are super important in your adventures with chronic illness—good relationships can sustain you through hard times, while poor ones can make everything a little bit harder. Many spoonies say that when they first got sick, they learned exactly who their real friends were very quickly. That being said, even the best of friends and the most well-meaning of family members will need a little help in order to best help you.

One of the most important things, you’ll find, is the ability to clearly state what you need. This can be hard (especially if you’ve never needed to negotiate in your relationships), but it’s absolutely worth the trouble. Being able to discuss your needs requires two steps:

1. Recognize what you need from a person.

To do this, really take some time to reflect on what elements of your relationship are keeping you from feeling safe or comfortable around that person, and what’s in the way of their supporting you. If something makes you angry, scared, or otherwise upset, examine that feeling and see what you learn about yourself and the other person involved. Be sure to consider where the line falls between “wants” and “needs.”

2. Communicate these needs in a way that the other person can accept and understand.

First, explain what’s causing trouble. Be sure to use “I” statements (“I feel Y when X”), and tread carefully so they don’t feel attacked. Then, suggest a solution that’s feasible on their end, always focusing on how their actions affect you without making value judgements. For most people, this sort of skill doesn’t come particularly easily—but pay attention and give yourself time to think things through, and you’ll surely end up better off.

As an example, when I became sick, my parents (who live across the country from me) were relentlessly optimistic. They’d tell me to be positive, that a solution was around the corner, and that I shouldn’t consider going on disability just yet. I wanted to tell them to cut it out, but knew they’d become more concerned and persistent if they felt I was “giving up.” What I communicated to them was something like this:

“Mom, Dad, I know positivity is important when dealing with illness, and believe me, I’m trying to stay positive. However, I am faced with a lot of really difficult realities, and when you tell me to be positive all the time or assure me it’ll all be fixed, it really invalidates the feelings I’m having and legitimate concerns I’m working through. I have a much better feel for what’s going on with me and what is and isn’t a possibility, so I need you keep the positive talk to a minimum, and trust my judgment when I’m concerned about something. ”

Don’t forget to ask for help!

Your friends and family will definitely want to help you out, but they might not be sure what’s going to be useful. If you’re uncomfortable making requests in the moment, you may want to sit down with your loved ones and discuss what things can help you at what times (you can even make them a list!). Swallowing your pride and asking for assistance with something you used to be able to do may be the hardest thing you’ll face as a spoonie, but don’t underestimate the positive impact it can have on your life.

Reactions

Not a lot of people really understand chronic illness and how it can affect you, so the majority of folks you meet will probably have reactions that leave you feeling not-so-great. Here are some you’re bound to run across:

 “Have you tried yoga? That always helps me feel better when I’ve had a rough week. ”

 “My cousin had that but she was cured after eating a fennel-seed-and-rosemary paste—so you should tell your doctor to give you that. Oh, and you should stop eating gluten, too.”

Why these suck

When it comes to other folks’ health, everybody has an opinion. It tends to come from a good place, though—when you tell a friend, family member, or even that nice lady on the bus about your illness, their first reaction is likely to be something along the lines of “how can I make this better”? However, without (and even with) real medical experience, their suggestions tend to be less than useful, and it’s frustrating to hear the same silly ideas over and over again. Plus, if it makes any sense at all, you’ve probably already tried it.

***

 It could be worse. I know a girl who lost all her limbs AND her left ear in a freak circus      accident. ”

 “Well, you look healthy! ”

Why these suck

Things like this invalidate the fact that you’re dealing with something very difficult, and minimize the pain or suffering you’re going through.

***

“You shouldn’t think of yourself as disabled; that’ll only limit you. ”

“You’re just being lazy. If you stay positive and really put your mind to it, you can do anything! ”

Why these suck

Responses like this categorically deny that something’s wrong with you, and completely invalidate your experience and how you’ve chosen to frame it for yourself. A lot of spoonies struggle with the feeling that they’re just being lazy or making everything up, so anything that affirms that belief is incredibly damaging.

* * *

“Get well soon! ”

“Okay, tell me when you’re feeling better and we’ll go extreme water-skiing again! ”

Why these suck

It’s hard enough coming to terms with the fact that your illness is chronic and not likely to up and leave you. It’s even harder when folks who mean well say things that just remind you of that.

*  *  *

Pretty much every spoonie experiences these kinds of thoughtless remarks, and for each one you hear, you’ll need to decide how you want to react. Remember that this choice is up to you and can totally vary by situation! If you decide that confronting someone about what they’ve said is going to be too much trouble, that’s just fine; likewise, if you feel like you really need to say something, go for it. You have a right to do either, and no one can tell you otherwise.

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Friends, Family, & Reactions from Others appeared first on Spoon Shares.

Most of the world considers school and work to be the bare minimum of a worthwhile life, which is somewhat flawed; it doesn’t make space for folks with special needs or disabilities. Nevertheless, you’ll likely meet people who fault you for deciding to prioritize your health, and you’ll probably spend a good time being angry at or disappointed in yourself for not being able to meet that standard. In those times, just remember that this is only a cultural script—you can have a full, productive, and fulfilling life even if you step outside the standard pattern. Caring for your health and well-being is of the most importance.

School

If you’re struggling in school, be sure to first reach out to your teachers or professors. There may be things they can do to help you or accommodate you so you can continue attending. If you’re in college, be sure to get connected with your school’s academic services or counseling center, which is meant to aid students who need special help. They may be able to provide note-takers for you, get you extended time on exams, and help you work around any other limitations you run into.

Work

Since your job is probably your only source of income, the stakes of being a spoonie are much higher. However, there are plenty of resources out there, so be sure to seek those out as you find yourself in need. Here are a few starting points for those of you in the US (other readers are likely to find similar or better opportunities in their home country):

• The Americans with Disabilities Act (ADA): Among many other things, this requires companies to provide reasonable accommodation for employees in need, and not discriminate based on disability.
• The Family Medical Leave Act (FMLA): If you qualify for this, it will allow you to take up to 12 weeks off from your job (continuously or intermittently) within the space of a year without putting your job at risk.
• Social Security Disability Insurance: Those who have worked a certain amount of time and have paid enough in Social Security taxes are eligible for disability payments.
• Supplemental Security Income (SSI): If you aren’t eligible for Social Security Disability insurance, this is another publicly-funded program that can help provide income.
• Private disability insurance: You may also receive disability insurance through your employer. Unlike the public disability options above, which only provide the bare minimum (or less) needed to survive, private disability insurance may allow you to keep the salary or a percent of the salary you are at when you stop working.

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Work & School appeared first on Spoon Shares.