22 photos of how illness changed people's bodies (that they're not hiding anymore)

22 Photos of How Illness Changed People's Bodies (That They're Not Hiding Anymore)

819
819
1

When life throws a chronic illness your way, you might find yourself struggling to reconcile your “old” self with the changes in lifestyle, diet or hobbies illness can bring about. But your physical appearance can also change – whether it’s a result of surgeries, medication side effects or a direct result of the illness itself. It can be tough to watch your body undergo changes, especially when you feel like you don’t have control over what’s happening. But it can also be a proud visual reminder of how strong you are and how much you’ve overcome.

We asked our Mighty community to share photos of how their bodies may have changed due to chronic illness — but they don’t want to hide anymore. If you find yourself struggling with self-esteem or identity because of how your body has changed, know you are not alone. But also know that no matter how your body changes (or doesn’t!), you are strong, you are beautiful, and you are a warrior.

 

Here’s what the community shared with us:

1. “These burns right here are from three years of consistent heating pad use due to an undiagnosed stomach illness that creates so much pain and nausea I have to be attached to a heating pad 80 percent of the day just to get some kind of relief. I used to be so ashamed of my burns, but I’m tired of hiding them. They are my proof that I fight an invisible illness that consumes my whole life.”

woman with burns on her stomach from heating pads

2. “My weight gain in four months from an extremely intense version of a very common reaction to amitriptyline. The rapid weight gain was a bit over three years ago, but completely ravaged my metabolism. My skin is covered in stretch marks that quite literally showed up so quickly that some of them first appeared looking more like bleeding blisters. My joints were destroyed and I could barely walk for more than six months because my body couldn’t handle the excess weight.”

before and after photos of a woman who gained weight due to medication

3. “2009: I was 17, a few months away from finishing high school. I had dealt with being a victim of bullying [due to] being disabled and living with spina bifida. I felt life was great and I was about to start a new life soon. 2017: I’m 25, and life didn’t go as I’d planned back in 2009. I graduated high school. I had set myself up to go to college and live a normal life as best as I knew [how]. [Since] being diagnosed with a mental illness, I’ve had to re-create my life a bit… But [because of the] medication I’ve been placed on in that timeframe, I don’t recognize myself. Mental illness may have taken a piece of me away, but it won’t win!”

side by side photos of a man in a wheelchair in 2009 and 2017

4. “My hands are deforming from rheumatoid arthritis. They are always swollen. Only 15 years into diagnosis and age 37, I worry about what they’ll look like in the future. But they show the pain I’ve endured and how hard I have fought for 15 years.”

woman whose hands are bent from rheumatoid arthritis

5. “I have a rare form of dwarfism and my bones are slowly breaking… I’ve had two surgeries so far and more to come. My legs are also affected.”

woman's wrist with broken bone and scar from dwarfism

6. “Having a central line for TPN and feeding/drainage tube in my stomach for digestive tract paralysis. It’s been [challenging] being a teenager with these tubes, but I am proud they’ve kept me alive!”

woman with feeding tube attached to her stomach

7. “Multiple knee surgeries for lack of cartilage. Lupus is definitely difficult to deal with, but I have it – it doesn’t have me.”

woman with stitches on her knee

8. “Chemo treatment made my hair fall out in huge clumps. My son helped me shave my head, but only if we shaved his too. It was hard at first, but now I just don’t care. Plus, bald chicks are adorable!”

woman and son with bald, shaved heads

9. “My scars, or what we call our zippers. This is after I shaved my head for St. Baldrick’s. This was between my third and fourth Chiari revisions. The fourth included skull to C3 fusion. I got the tattoo before I knew I needed another surgery but with us Chiarians there can always be another. The tattoo is my way of raising awareness and adding a little humor.”

woman with scar on the back of her head/neck from chiari

10. “This surgery and bimonthly injections into my face have changed my face shape and movement, probably permanently.”

a woman's face wrapped in a bandage after surgery and injections

11. “Skin tumors from neurofibromatosis. They’re all over my sides, lower back, pelvis and down my left leg. I also have plexiform tumors inside my body, in my sides, on my sciatic nerve and wrapped around my aortic artery.”

woman with scars on her skin

 

12. “Welp. This was me at 27 when I finally had all my teeth removed. They started falling out of my head at 19 years old. I’m 29 now and have been toothless for two years for a variety of reasons. Thanks, Ehlers-Danlos.”

woman without teeth smiling

13. “This is lipedema. I have painful, large, trunk-like legs that bruise extremely easily. They swell with changes in my hormones. It makes exercising feel almost impossible unless I’m in a pool. It makes the daily walking a person does feel like a marathon. It is largely unaffected by diet and exercise. It showed up at puberty and got worse with each pregnancy.”

woman's legs swollen due to lipedema

14. “I was born with a rare disease called multiple hereditary exostoses. I have hundreds of bone tumors all throughout my body, and the only treatment is surgical intervention. So far I’ve had 42 tumors removed, and have scars all over my legs from my surgeries. I used to be self conscious about my scars; in high school I even tried to cover them up with make-up. Not any more. Now that I’m older, I now understand each scar tells my story, and shows the war I am fighting with MHE. This scar is my favorite one – it’s two feet long and from my most recent surgery where I had 20 tumors removed from my hip and had my hip completely reconstructed. Recovery from that surgery was the hardest one to date, so I wear this scar with pride.”

woman in bathing suit lying on a lounge chair with a long scar down her leg

15. “My peritoneal dialysis catheter. I used to be so ashamed and embarrassed but now I embrace who I am. I am not my illness! [To] everyone who has shared a picture: you all are my heroes and have so much courage!”

woman with tube leading into her stomach

16. “My face is permanently scarred from the lupus lesions. When I’m having a flare-up they burn and blister. They’re all over my body, not just my face. I used to wear make-up every day to cover them. Now I’m too exhausted to bother and I no longer care if people stare.”

woman with scars on her face from lupus

17. “My fibrous dysplasia caused changes in my right leg, but mostly my skull. It’s full of lumps and bumps. One part that really bothers me is the lump on my lower jaw. I’m not afraid to show the world if it means raising awareness.”

woman with a lump on her head

18. “Ehlers-danlos syndrome left me with these wicked knee braces. People stare but it doesn’t matter. They are my new legs and I love ’em.”

man with knee braces on both legs

19. “Systemic lupus. Destroyed my skin.”

woman with red rash on her arm

20. “Scars and excess skin from weight loss after the diagnosis of Crohn’s disease. Plus my funny-looking belly button.”

woman with excess skin around her abdomen due to weight loss

21. “I recently lost my colon, rectum and anus because of Crohn’s disease and have a permanent ileostomy.”

22. “Got this beauty mark after my brain surgery.”

woman with scar on the side of her head after brain surgery

22 Photos of How Illness Changed People's Bodies (That They're Not Hiding Anymore)
819
819
1

RELATED VIDEOS

TOPICS
, Listicle
JOIN THE CONVERSATION

What People Wish They Knew When They Started Prednisone

355
355
3

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.

355
355
3
TOPICS
, Video
JOIN THE CONVERSATION

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

296
296
1

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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Halfpoint.


20 Summer Activities to Keep Kids Busy for Moms With Chronic Illness
296
296
1
TOPICS
, Contributor list
JOIN THE CONVERSATION

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

732
732
9

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

732
732
9
TOPICS
JOIN THE CONVERSATION

We Need to Stop Shaming Others for Their Treatment Choices

438
438
3

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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via ARTQU.

438
438
3
TOPICS
JOIN THE CONVERSATION

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

173
173
16

“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.

We want to hear your story. Become a Mighty contributor here.

173
173
16
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.