A young girl in glasses.

When You Have an Invisible Illness and You're Judged By Your 'Cover'


The first time I realized the accuracy of the name “invisible illnesses” was in an emergency room.

If you met me that day, you would likely see a young, quiet blonde haired girl with no signs of physical injury. However, the saying “don’t judge a book by its cover” is painfully accurate. I was quiet due to the fact my tonsils had swollen to the size of oranges. This was due to a myalgic encephalomyelitis ravaged immune system that had decided to pack up and go on holiday right as the Epstein-Barr virus decided to set up shop. And when you can’t open your mouth without drooling everywhere, it’s nice to sit and just focus on breathing through the tiny hole in the fire pit of your throat.

Sitting behind me was a middle-aged woman and her husband that had arrived just after me. I may have had an almost completely blocked throat, but my ears were working just fine. Fine enough that I heard the woman turn to her husband as a nurse called my name, and mutter,
“Must be one of those hypochondriacs. She’s too young to be really sick.”

Since then I have heard enough variations of that sentiment to produce a full color spectrum. It has come from every angle more times than I can count. Hearing statements like that used to make me question if I’m sick enough. But being sick at all is sick enough. Feeling restricted in any way due to your illnesses, physical or mental, visible or invisible, traceable or not, is sick enough. I am valid, because I feel this way, and I know this isn’t “normal.” And hearing these things doesn’t make me angry. It makes me sad, and I’ll tell you why.

Woman from the emergency room, I would love it if what you said was true. It doesn’t seem likely that young people can get sick in no visible way. Yet, the most common time for people to get myalgic encephalomyelitis is between their 20s to mid-40s. It’s the same with many invisible conditions, such as fibromyalgia (ages 25-55), lupus (ages 15-40) and Crohn’s disease (20-29).

But I know why you thought that I was “too young.” It’s common for people to think that, because we are part of the group of invisible illnesses. Doctors used to call it the “yuppie flu,” because no one could see it physically, or through medical tests. The sentiment and all varieties of it is still a running theme among both the public and medical field. The problem isn’t with us, it is with the way society views (or doesn’t, in this case) invisible illness.

Times are changing with more people speaking out about mental and physical illness through movements like #MillionsMissing, or awareness months, or even just educating one person. We hold our power in sharing our stories, and educating others around us. We have been bought together, and we are stronger for it. And the more we speak up and normalize our existence, the less people will assume illness must be visible to be valid.

Woman from the emergency room, I hope meeting me changed your perception of what illness looks like. Because when you walked into the emergency department an hour later I saw you really see me. I saw you observe how I was hooked up to an IV, while my nurse took my vitals for what seemed like the hundredth time. You heard the doctor telling him to administer medication in an hour, three hours, six hours. Because you then made eye contact with me, and in that moment, I hope you understood: my illness doesn’t always have to be visible for you to see it’s real.

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Thinkstock Image By: 1Viktoria

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What People Wish They Knew When They Started Prednisone


Mighty readers share what they wish they knew about prednisone before they started.

Read the full version of 17 Things People Wish They Knew When They Started Prednisone.

Read the full transcript:

What People Wish They Knew When They Started Prednisone

“It was a quick fix, not long term, and you have to decide if the side effects are worth the benefits, especially with other conditions.”

“I have anxiety and it increases my anxiety for me, so during my prednisone courses I get frequent panic attacks.”

“I wish I knew exactly what moon face was — that my whole face would look super swollen and puffy for a really long time.”

“I wish I knew how serious it was to go up on a dose because it’s so hard to lower the dose. It’s the drug we love to hate.”

“It makes me so ravenously hungry.”

“The weight gain, how it affects your nerves, destroys your bones long term, but nothing else works like it if you need it.”

“I didn’t expect my teeth to get so sensitive or the insomnia that accompanies taking it.”

“I wish they’d shown me the three pages of common side effects before prescribing me it so I could make an informed decision.”

“While many people have terrible side effects it’s not guaranteed you will experience all of them.”

“I wish I knew that I would still be on it 20 years later!”

This video is based on the experience of individuals. Please see a doctor before starting or stopping a medication.

mother holding daughter as she looks out the window

20 Summer Activities to Keep Kids Busy for Moms With Chronic Illness


If you are like me, you have two daughters at home for summer vacation. I don’t know how many times a day I hear “Mommy, I’m bored,” and most of the time I feel like I don’t have the energy to take them anywhere. So I’ve been looking into fun activities for kids of all ages, since mine are 7 and 14, which is a huge difference lately. So here are 20 ideas we came up with of things to do when Mom isn’t up to a lot.

1. Have an A-Z scavenger hunt. Give each child a piece of paper with lines for each letter. Have them go around the house trying to find an item from each letter. Have a hard letter and can’t find anything? Wait until you go somewhere and try to win the game!

2. Let the kids make a fort in the living room, or their room. Let them read a book, or play with toys in their forts. If you can, go in and visit for a while.

 

3. Host an old school movie marathon with movies you watched when you were a kid. Make memories with them that include some of your favorite memories as a child. I know I remember which movies me and my mom watched!

4. Write a summer journal. Have a shared family journal and have each member write something good that happened that day in it.

5. Take a virtual vacation. Pick a place you know nothing about, and let your kids research about the history, the attractions, maybe even order travel brochures if available. Have kids present all the information they learned in a family night.

6. Let your daughters host you a tea party, or your kids can have a picnic inside. Don’t stress if you can’t eat – they will love just having your presence there with them.

7. Gather some family pictures and let your kids make a family photo album or a collage to hang on their bedroom wall. People love to be reminded of who loves them – let them make you a collage!

8. Cut up some old magazines and make an art journal with things you like and that represent you. Make an inspiration collage of things you want to do or things you want to achieve.

9. Make your own greeting cards out of construction paper and have your kids send to loved ones like grandparents, aunts and uncles, family friends. Help them with their writing skills if they are school-aged, and let younger ones just draw a card. People love unexpected mail from loved ones.

10. Each family member pick an animal and do a report on everything unusual and interesting they can find on the animal. Print pictures or show pictures on a computer or phone during your presentation. Try to learn something new and keep everyone interested.

11. Learn how to make slime! Keeps kids interested for hours and doesn’t need a lot of effort or time. Just search slime recipes in your favorite search engine.

12. Look up kids dance videos on YouTube and let your kids dance off some energy trying to learn the dance. Lots of laughs for you and them.

13. Let your kids give you a makeover. I know both my girls love this, it’s perfect for the little ones and the big kids! Let them brush your hair or give you a massage.

14. Put on a fashion show with the kids allowed to get anything out of anyone else’s closet to make the cutest, wackiest, funniest outfits. Give them all special titles for different categories they won.

15. Have a family sleepover in the living room and watch movies as late as you can.

16. Pull out your coloring books (and your kids!) and have a coloring party together.

17. If you are up to it, look into activities at the library. Most libraries have great free programs! Or just visit and check out books for kids to read. Have a contest to see who reads the most over the summer.

18. Have each child pick five toys to donate to someone else. Make it a project to find somewhere to donate (shelters, churches, offer them online). Feeling productive? Have them each find 10 items of clothing that won’t fit them next year or that they don’t like to donate as well.

19. Make a family newspaper. Draw pictures, share memories of things you did that week/month. Include a family calendar and schedule movie or date nights. Let each family member figure out what they are good at and include that may it be drawing, writing, poems, anything creative!

20. Host a read-a-thon and challenge each child to read a certain amount of time per day, or a certain number of books. Make bookmarks together to motivate them to read. Have a small prize like a new book to reward the winner.

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Thinkstock photo via Halfpoint.


20 Summer Activities to Keep Kids Busy for Moms With Chronic Illness
chronic illness memes elsa

'Chronic Illness Memes' Instagram Uses Animated Characters to Describe Chronic Illness


We all know that watching Disney or other animated movies can be a great way to lift your spirits on a tough day with chronic illness. And as the Instagram account @ChronicIllnessMemes shows, those characters can also be surprisingly perfect at representing what it’s like to be chronically ill.

The account was created in 2015 by Kelly Patricia, a 26-year-old from Florida who lives with several chronic conditions, including endometriosis, inflammatory bowel disease and rheumatoid arthritis. She told The Mighty that her goal is to help others with chronic illness feel less alone and bring joy to their days.

“Since I know how stressful life with chronic illness can be, I wanted to do something that would make people laugh and possibly even make them forget about their pain for just a moment. Laughter is truly the best medicine; it’s free and has no bad side effects!” Patricia said.

 

Patricia said she gets inspiration for her memes from how she’s feeling, or how someone around her who has chronic illnesses is feeling. Then, she’ll write up a relatable quote and search for a popular animated character that has the emotion or reaction she’s looking for to match it.

“I feel like [animated characters] are friendly for all viewers (no matter what age they are),” she said. “Plus, animated characters have so much emotion and personality that it’s almost impossible not to relate to them!”

In addition to @ChronicIllnessMemes, Patricia also blogs and runs a YouTube channel to spread awareness of illnesses and encouragement to those who are struggling. She said everyone seems to relate to one meme or another.

“It truly shows how the little things really do make a big difference!” she said.

Scroll through for more memes or check out @ChronicIllnessMemes on Instagram.

'Chronic Illness Memes' Instagram Uses Animated Characters to Describe Chronic Illness

black and white painting of a woman with red lips

We Need to Stop Shaming Others for Their Treatment Choices


As someone living with reflex sympathetic dystrophy (RSD), also knowns as complex regional pain syndrome (CRPS), being part of a supportive network of people who struggle with the same diagnosis has been a critical component of how I manage living with this disease.

Online support groups, in-person meet-ups, group chats and message boards are some of the most common ways we connect with others around the world to learn what treatment options are available to us.

While generally these mediums are supportive, safe spaces, I’ve noticed a trend over the last few years that has become increasingly bothersome to me and many others: treatment shaming.

 

RSD/CRPS is considered a rare disease, which translates into limited funding for research and treatment, minimal to no education for the medical community and a general lack of awareness. Because of this, the rate at which new treatments are being looked at and made available is moving at less than a snail’s pace.

Understandably, whenever a new treatment actually does becomes available, a lot of buzz and hope is created.

Over the last 13 years since my diagnosis, I’ve seen many treatment options briefly rise in popularity, stirring up much excitement in the community, often elevated to the status of latest fad. And, like most of them, their moment in the spotlight fades, and we are simply left with yet another mediocre option.

With any treatment there are usually success stories, and oftentimes those eager to share their positive experience align with doctors and other people in the community who adopt a singular point of view on how the disease should be treated and managed based on their personal experience.

Some then take this a step further and attempt to persuade others that their treatment regimen or doctor is not properly managing them because they have chosen a different path. Bullying tactics and fear often accompany this, causing some community members not to feel safe sharing their experiences with treatment. This is the definition of treatment shaming.

All of this has led to hurt feelings, misinformation and exclusionary behavior towards those who chose other treatment routes and creates division among the community.

This issue is not limited to the RSD/CRPS community. In fact, many rare disease communities also facing the same hurdles for proper research and treatment for their specific disease also experience this.

It is never OK to shame or judge someone based on their chosen treatment path.

As people with a chronic illness, we already face so much criticism and misunderstanding from others who don’t understand our experience. It’s very difficult when that begins to occur within our network of support. Shaming or hurling an unsolicited opinions towards others based on their treatment choices can be hurtful, discouraging and even dangerous.

Treating RSD/CRPS is a journey – one that is both personal and unique to each individual. There is no right or wrong way to manage this very difficult disease.

We are all in this together. Let’s lift each other up, and hold space for our fellow warriors without shame or judgement.

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Thinkstock photo via ARTQU.

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I'm Allergic to Touch, and No One Believes Me


“I don’t believe in that.”

It was the first time I heard it, and it threw me. I sat in the gastroenterologist’s office, hands in my lap, as he explained to me that aside from a little inflammation, there was nothing physically wrong with my intestines.

I had just suggested, in my limited, 19-year-old medical vocabulary, that perhaps I had something like SIBO (small intestinal bacterial overgrowth). I knew full well I ate a relatively healthy diet, that the occasional pizza wasn’t the reason I was getting sick after every meal. But he brushed it off. Maybe, he speculated, I was lactose intolerant.

I left the office, passing a waiting area and a fountain. I vomited into my mouth quietly, barely noticing because I had become so accustomed to it. I ran through the appointment in my mind. Nothing wrong. Eat healthier. Blood test results normal. Lactose intolerant. I don’t believe in that. I don’t believe in that.

 

It was six months until I took matters in my own hands. By process of elimination, I began removing common allergens from my diet, and reintroducing them one by one.

I was not lactose intolerant. I was having extreme, multi-system reactions to almost every staple in my diet. Soy, corn, wheat and yes, dairy. And I wasn’t just reacting to eating those foods, I was reacting to touching them  –  more specifically, to touching other people who had minuscule amounts of food on their hands.

I went to an allergist next. I laid on my stomach during the skin test, burping and throwing up into my mouth because tiny amounts of dairy, soy and wheat had been pricked into my back. But while the allergist and the nurse both showed great concern for how visibly ill I was becoming, the test results were negative. I had “true allergies” to grass and dust mites and pollen  –  but not to any of the things I’d identified as making me so ill.

I expressed my frustration to the allergist, explaining I was reacting to tiny amounts of specific foods, regardless of the skin test results. “I can’t help you with that,” he said. “You should see a gastroenterologist.”

It’s been four years since I started to get sick. Three years since I discovered I was reacting to foods. Two years since I shook hands with someone holding a coffee, and realized 10 minutes later I had become allergic to human touch.

“I can’t shake hands because of my chronic illness,” I tell people. “It’s nice to meet you, though.” There hasn’t been a single time the other person hasn’t been thrown. When people ask me to explain, I see the same incredulity in their eyes as I’ve seen in the eyes of so many medical professionals. I don’t believe in that.

At first, even my partner wondered if it might be psychological. Maybe I was having anxiety about contacting or ingesting the foods, and that was manifesting in physical symptoms. We were in a long distance relationship, so eating together wasn’t a regular occurrence. But after the first time they watched me fall ill because they had eaten dairy and then kissed me, they didn’t wonder anymore. They didn’t have to; they were close enough to see it.

I’ve never had a choice but to believe in it. My body is living proof. A speck of my housemate’s spit hit my face as she laughed, and I spent the rest of the day in bed, sick to my stomach, brain fog so thick I could barely form sentences. A radiologist touched my face rather than simply asking me to move my head to the right, and my partner had to steer me home by the arm because I was so dizzy and confused.

While those close to me believe me and support me — wash their hands with corn-free soap when they come to my house, hug me over my clothes, don’t complain that we can’t go out for lunch — outside of my inner circle, particularly in medical settings, I have been met overwhelmingly with skepticism. When modern medicine does not have a name for your experience, most people assume the problem is you, not the lack of research into rare and chronic illness.

It’s not just an issue because I’m sick and there’s no definite reason why, no treatment, no solution. It’s an issue because having my experience invalidated in medical settings legitimizes its invalidation in all settings. It’s an issue because when people disbelieve me, they often go on to do things which I’ve just told them will make me sick. A family member once gave me vegetables covered in butter and told me they were plain. They assumed it was all in my head  –  that if I didn’t know the butter was there, I wouldn’t get sick from it.

How many days should I have to spend unwell and in pain to prove to the world I’m not making it up? What if I shake someone’s hand before my next gastroenterologist appointment, and vomit onto the floor instead of choking it down? Would I be believed then?

Or would I just be told I’m lactose intolerant?

This post originally appeared on Medium.

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