Tag Archives: Autism

What does autism feel like?

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My fear comes from two places.

a woman in a vest and white shirt looking up at the camera

The first is that I never want anyone to take my personal experience of living life on the spectrum as being the universal experience of living life on the spectrum. My story is just that — my story, and while there can always be common denominators in the autistic experience, there is also much diversity. That’s why they call it a spectrum.

Dr. Stephen Shore once said, “If you’ve met one person with autism, you’ve met one person with autism.”

The specific ways that autism feels and manifests in me may be very different from the specific ways in which it feels and manifests in someone else. So, I’m sometimes afraid to say how it feels because I don’t ever want to be set up as the “autistic standard.”

The second source of my fear is that there have been some folks who’ve just not been very nice when they’ve learned what life’s actually like for me. I’ve been called “crazy” and “cuckoo” and “a couple of fries short of a Happy Meal.” I’ve been labeled a lunatic and laughed at by those who really should know better. I’ve had people talk terribly about me behind my back — not knowing their words would eventually make their way to my face… and more painfully, to the center of my heart.

Their cruelty has made me cautious, and there have been times when I’ve considered catapulting myself away from this public perch as an autism spokesperson.

Every time I prepare to turn tail and run, I inevitably receive an email from a mom who’s hurting and confused and trying desperately to find one tiny hook to hang her hope on as she battles what is tormenting her child. She asks me to help her understand even an ounce of what her little one might be feeling, and I realize that I can’t allow mean comments or the face of my own fear to silence this story.

So, today I go to that place where I’ve often feared to publicly tread.

What does autism feel like in me? Well, autism often feels awful.

Before I give you some specific examples from my own existence, let me make sure that you understand what autism spectrum disorder (ASD) actually is.

Autism is a neurodevelopmental disorder that is often characterized by varying degrees of struggle with social interaction, verbal and nonverbal communication, sensory processing, and restricted or repetitive behaviors. I’m going to break some of that down for you — at least as some of these things manifest in me — but I want you to recognize that all of the “psychological” manifestations that you see in a person with ASD actually flow out of the underlying neurological system of ASD.

The behavioral chicken hatches out of the physiological egg.

That’s important to understand, because when people with autism seem to be “behaving badly,” it’s often because we’re hurting badly.

The Frayed Wire

I often explain the neurological framework of autism (the framework from which autistic behavior flows) by likening the physiological pathways of the autistic body to that of a frayed stereo speaker wire.

Everyone with autism has some form of sensory struggle. Sight, sound, smell, taste and touch (the five senses that all of the experiences of life must pass through) can be absolutely harrowing and horrifying to a person with autism. Everything that enters the ASD body is often accompanied by some semblance of pain or at least by some extremely uncomfortable sensation. Here’s where the analogy of the frayed wire may help you understand autism a bit better.

When you go to your stereo and turn on the tunes and all is working well with the speaker wire, then the sound is sweet, crisp and clear. You hear what the artist and producer intended for you to hear — and it’s a good and pleasant thing.

However, if your speaker wire has a short in it, if it’s frazzled by a fray, then things might not go so well, and a clear connection could be lost.

There are moments when that frayed wire may be in the perfectly placed position to still allow really solid sound to pass through. In that moment, the music is coming through loud and clear and you get to enjoy the groove.

But then something shifts — even just a little, and suddenly that worn wire produces static (and maybe even sparks). The music’s still there, but with it is another competing noise — a sharp and crepitating noise — a noise that’s taken something pleasant and made it painful.

All of a sudden something shifts again, and everything has gone from simple static to overwhelming and excruciating white noise. In the chaotic cacophony you find yourself reaching for the volume control in order to mute the mess because it hurts.

Then things shift once more and the frayed wire is now in a position where nothing’s getting through. The connection has been lost and all is silent. The stereo itself is still making a melody, but that melody is trapped inside the machine and unknown to anyone on the outside.

Welcome to autism!

Our neurological wiring — the “speaker cable” through which the five senses travel within us — is “frayed.”

At one point we’re positioned so that the things of life are coming through clearly and we may almost seem OK and maybe even “normal” — our melody might momentarily sound marvelous.

Then the wire wiggles and begins to produce some static — and we become confused and stressed because we’re trying to hear the “tune” of our surroundings over and against the torture of the snap, crackle and pop of the crimped cord.

Suddenly the wire is all static and we’re utterly undone — because the racket is just too much to bear and we’re suffering from the neurological distress.

And then there are those times when the connection gets completely cut and we find ourselves disconnected from the music and meaning of life. The tune is still in our head — we just can’t get it out for you to hear.

The “frayed wire” that is autism is not a pretty place and is often a painful place.

I’d encourage you to remember this analogy when you see a person with autism struggling with a shutdown, or a meltdown, or an absolute disconnect to his or her environment. The neurological wire’s not working well. We’re not “insane” — we’re in pain!  Please have some mercy in the midst of our malady, and show a little compassion to us (and to those with us) as we seek to navigate the nightmare.

My Own Experience With Autistic Angst

The personal pieces of how autism’s “frayed wire” fleshes out in my daily existence, well, those are varied and would take a lot of time to walk you completely through — but I’ll give you a glimpse and will trust that you’ll love me and not laugh at me as I un-bear my burden.

My hope is that this will help you understand a bit more about life with autism, and that as your understanding increases so will your heart for those who are hurting — no matter how they hurt.

Where the sensory is concerned, much of my life has been lived without filters attached.  For many people, the brain naturally sifts and separates visual, auditory, olfactory and tactile information. Your brain is able to decipher and discern what’s important to focus on and set aside that which is less relevant at the moment.

In my experience with autism, everything flows through with equal force. Life is like a continual sensory storm. A raging flash flood of sensorial data is always pulsing through the marrow of my bones. It’s a never-ending, devastating deluge of chaotic kinesthesia. There’s no sensory spillway; a dam’s not even dug to help control all that’s pouring into me. Everything hits me full on, and I’ve had to learn to sink or swim against the surging onslaught of my five senses.

Where sound is concerned, the voices and vibrations of this world are always pounding upon me. Life is loud! This can make carrying on a conversation in a room full of people a true challenge — because I hear everything at equal volume. My auditory abilities are often extreme. In that room, I hear your hair. Yes, you read that right. In a room full of people I literally can hear when someone’s hair moves in the wind or when they brush their fingers through it. In that room as you and I are trying to talk, I am hearing everyone else’s conversations as clearly as our own (along with their hair!) — and that’s a confusing thing, because which words am I supposed to be interacting with as we chat? Take that scenario and apply it to the classroom, the park, the church, or Walmart. It can be absolutely overwhelming!

As a young child I was barely able to eat in front of others (many assumed I had an eating disorder) because of the pain I felt when someone’s fork touched their teeth. In a restaurant, I was always undone because not only did I hear multiple food implements on everyone’s incisors, but also all of the kitchen noise, and chewing, and swallowing, and breathing, and the transfer of change at the cash register, and the hum of the fluorescent lights, and everyone’s clothes making contact with their chair (oh yes, and their hair!) — on and on and on it goes.

The amount of auditory information that my brain was processing was overwhelming and it usually resulted in a panic attack — even at the age of 8. Everything that I heard hurt — it still does. By grace, though the years I’ve been able to develop some coping skills that now allow me to handle this a bit better — or sneak away when I know I can’t.

My visual experience is also rather radical. Bright light can be painful — honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense — and that sometimes makes it hard for me to focus on the central thing I’m supposed to see. I’ve found that wearing a ball cap helps me filter, by force, that which is crashing in by flood — it works in the same sense that “horse blinders” do at the race track.

One of the unique and challenging aspects of ASD for me is that my neurological wiring has an odd criss-crossing of visual and tactile. I feel what I see. When I look at a tree, I literally feel the bark. When I see a wall or a chair (or your hair), my body senses its surface. When I read a book, I feel the page. The same is true when I see your face, yes, I feel your face… which is one piece of the problem that some with ASD may have when looking others in the eyes.

Take a moment and look around.

Think about what it would be like to feel everything your eyes see. Welcome to my world!

My panoramic vision and the accompanying deep memory vault that can often be part of autism have an interesting correlation. I view life in pictures and my brain categorizes and catalogs all that I see.

Everything I look at goes into what I call the mental “file folders” of life. Things are subconsciously stored in my mind, in vivid detail, and under specific headings — I’m not able to always call things up on command, but I regularly experience a meticulous mental “finger-flipping” through the files of past experience when I enter a similar situation.

For example, when I walk through the door of my house, my mind flips through the pictures of every other time I’ve ever walked through the door of my house. It’s an involuntary visual occurrence that at times can be overwhelming. When I grab a shirt out of the closet, I relive where it came from — even down to the rack at the store where I found it and what other shirts hung near it, as well as all the other times I’ve worn it.

I may sit down for a haircut and in a matter of moments relive every other hair cut I’ve ever had (in great detail: the number of combs or brushes on every counter, the pattern of the tile, the position of the pictures, the people congregating for a coiffure). The same could be true when I go to a drive-in window, play a piece on the piano, or see you in the grocery store. Please realize this if I seem startled when I run into you somewhere — I may be reliving our entire relationship!

One tough aspect of that deep “file folder” memory, as it’s coupled with the disconnect of autism’s frayed neurological wire, is that sometimes it can be hard to moor myself to the current moment. There are times when I have to fight in order to determine which picture I’m seeing is the current picture. Which image is the here and now? Is this scene of life “live or is it Memorex?”

In light of this reality, I sometimes feel like I’ve never fully lived a moment of my life (the frayed wire), nor ever truly escaped one (the visual file folders). And that can be really hard at times.

Where touch is concerned, I often physically feel things from the inside out. When you touch my flesh, the first sensation that I have is from the center of my bones — and it can be rather fiery — anything from a dull burn to extreme electrocution. That feeling then flows backwards to my skin, at which point it’s usually not quite as painful.

Often when someone shakes my hand, or pats me on the back, or kisses me on the cheek, I will feel that sensation for at least an hour before it fully dissipates.

Clothing can hurt to wear.

Sheets can hurt to cover up with.

The most intimate forms of affection can be a great affliction.

There are times when the internal terrorism of the tactile makes me want to rip my bones from my body — which is one of the reasons you’ll often find those of us with autism engaging in some form of stimming (rocking, flapping, finger flicking) — it’s our attempt to counter all that is caustic.

Because I speak and sing for a living, people are often shocked to learn that I struggle with issues of communication — verbal and nonverbal.

My verbal abilities have been honed through years and years of hard work (my mom used to drill me on the practice of public speaking over summer break). In spite of the success I’ve had in overcoming my struggles, throughout my life there have been many seasons of selective mutism. Honestly, in certain settings there are still those moments of selective mutism, because I know the “wire” isn’t working well and that my attempts to talk aren’t going to end well. So I simply don’t talk. To me, silence has always been a virtue of self-survival.

When I do talk, I constantly coach myself in order to make my mind and my mouth correctly connect. Speaking is not an unconscious or habituated thing for me (really nothing is a habituated thing for me because I think through every action in great detail).

My talking to you is an exercise in extreme self-control and a labor in almost Nietzschean “will-to-power,” which can be exhausting — and which is one of the reasons I can only endure so much conversation before I have to bail. Sometimes I realize I can come across as a little bit rude — it’s because I’m worn out from words. That’s no excuse for sinful behavior, but perhaps it will help you understand my struggle with that behavior.

Because my mouth and my brain don’t always work well together, I have found it much easier to allow my thoughts to fly from my fingers than to leap from my lips. That part of my “wire” isn’t nearly as frayed and is definitely my preferred form of communication.

Where the nonverbal is concerned, there are so many stories.

As a young child, I spent hours in front of the mirror teaching myself how to really smile.  Even now, there’s a “director’s voice” in my head where I walk myself through which learned facial expression is the appropriate one for the moment. My vault of “file folders” is part of what now helps me read other’s expressions accurately — I automatically pull up other encounters with laughter and sadness and seriousness, and then apply that “photograph” to the current event.

I also trained myself to look people in the eyes at a young age. From my earliest days I can remember my neck shaking and my head drifting down when someone’s eyes would “touch” my own  (an eye “touch” is what it felt like, and it was incredibly uncomfortable — it was moist and squishy and made my skin crawl).

As an elementary-aged child, I forced myself to sit in class and stare the teacher down from a distance. When my neck would begin to shake and when my eyes started to drift, I would push all of the pressure of my neck muscles down through my body and into my toes — establishing a form of muscular “toe transference” that I still use to this day as a primary form of autistic coping.

I could talk to you about so many other things: strong seizure-like moments where my brain seems to shake in a violent fashion or petit mal periods that steal away sections of my day. I could discuss why at times I hit my head, why running is almost impossible for me, how monocular vision may possibly be playing a role in my inability to determine depth, and how hard I’ve had to work to learn to develop empathy for others — because emotional understanding, for me, has been an autistic anathema that only the mercies of Christ have helped me overcome.

What does autism feel like?

In me, it feels like all of this and more.

What words will ever adequately explain?

I know them not.

What I do know is that through every autistic “danger, toil and snare” through which I’ve already come, “’tis grace has brought me safe thus far, and grace will lead me home.”

In that grace, I find a sufficient salve for all of my autistic suffering. And as I’ve given the smallest glimpse into my own version of autistic angst, I truly pray that you have increased in even the smallest sense of autistic sympathy!

A version of this post originally appeared on A View From The Sycamore Tree. Follow this journey on Lori’s website.  Written by Lori

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


We face disability, disease and mental illness together. Proud Media, Inc. All Rights Reserved.

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Horse Therapy, could this be for you or a loved one?


Horse photos

I had the pleasure of crossing paths with Kara Lund Padilla via facebook, then by telephone and I believe we were meant to meet, Kara has a business called Equine-sense.com. Kara has found away to take her passion to help others. She uses her passion of horses to help children and adults either learn to ride horses for Fun, hobby or for therapeutic purposes. I didn’t understand myself the benefit, Kara and her team teaches the care of the horse, the techniques of riding horse and they bond with the horse. All done in a safe environment for people with special needs. Although she is in Texas, she does have camps, but if you read and click on the blog, you can learn more about what she does and you may be able to find someone close to you that offers the same type of therapy. I always want to bring attention to someone who is using there passion not make millions but to help others. That to me is hard to find and considered a Hero. Kara is down to earth, easy to talk to, humble, willing to answer her questions. If you can go on her web site and check out all the beautiful horses and ranch I know Kara’s team that helps her with the ranch have to be gentile and loving people as well. A Therapy I never thought of. Kara is a pure gift. I am looking forward to moving forward in our friendship. We both have the same mission to help people, Not to many people out there helping others.. So I see our friendship will be a positive wonderful experience and journey together. http://www.equine-sense.com/

Please check out her site, look under her blog and how they can help you or your loved one. Kelly

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Missing link between brain, immune system with major disease!

Missing link found between brain, immune system — with major disease implications

Implications profound for neurological diseases from autism to Alzheimer’s to multiple sclerosis

Credit: University of Virginia Health System

Vessels directly connecting brain, lymphatic system exist despite decades of doctrine that they don’t
Finding may have substantial implications for major neurological diseases
Game-changing discovery opens new areas of research, transforms existing ones
Major gap in understanding of the human body revealed
‘They’ll have to change the textbooks’

CHARLOTTESVILLE, Va., June 1, 2015 – In a stunning discovery that overturns decades of textbook teaching, researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. That such vessels could have escaped detection when the lymphatic system has been so thoroughly mapped throughout the body is surprising on its own, but the true significance of the discovery lies in the effects it could have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.

“Instead of asking, ‘How do we study the immune response of the brain?’ ‘Why do multiple sclerosis patients have the immune attacks?’ now we can approach this mechanistically. Because the brain is like every other tissue connected to the peripheral immune system through meningeal lymphatic vessels,” said Jonathan Kipnis, PhD, professor in the UVA Department of Neuroscience and director of UVA’s Center for Brain Immunology and Glia (BIG). “It changes entirely the way we perceive the neuro-immune interaction. We always perceived it before as something esoteric that can’t be studied. But now we can ask mechanistic questions.”

“We believe that for every neurological disease that has an immune component to it, these vessels may play a major role,” Kipnis said. “Hard to imagine that these vessels would not be involved in a [neurological] disease with an immune component.”

New Discovery in Human Body

Kevin Lee, PhD, chairman of the UVA Department of Neuroscience, described his reaction to the discovery by Kipnis’ lab: “The first time these guys showed me the basic result, I just said one sentence: ‘They’ll have to change the textbooks.’ There has never been a lymphatic system for the central nervous system, and it was very clear from that first singular observation – and they’ve done many studies since then to bolster the finding – that it will fundamentally change the way people look at the central nervous system’s relationship with the immune system.”

Even Kipnis was skeptical initially. “I really did not believe there are structures in the body that we are not aware of. I thought the body was mapped,” he said. “I thought that these discoveries ended somewhere around the middle of the last century. But apparently they have not.”

‘Very Well Hidden’

The discovery was made possible by the work of Antoine Louveau, PhD, a postdoctoral fellow in Kipnis’ lab. The vessels were detected after Louveau developed a method to mount a mouse’s meninges – the membranes covering the brain – on a single slide so that they could be examined as a whole. “It was fairly easy, actually,” he said. “There was one trick: We fixed the meninges within the skullcap, so that the tissue is secured in its physiological condition, and then we dissected it. If we had done it the other way around, it wouldn’t have worked.”

After noticing vessel-like patterns in the distribution of immune cells on his slides, he tested for lymphatic vessels and there they were. The impossible existed. The soft-spoken Louveau recalled the moment: “I called Jony [Kipnis] to the microscope and I said, ‘I think we have something.'”

As to how the brain’s lymphatic vessels managed to escape notice all this time, Kipnis described them as “very well hidden” and noted that they follow a major blood vessel down into the sinuses, an area difficult to image. “It’s so close to the blood vessel, you just miss it,” he said. “If you don’t know what you’re after, you just miss it.”

“Live imaging of these vessels was crucial to demonstrate their function, and it would not be possible without collaboration with Tajie Harris,” Kipnis noted. Harris, a PhD, is an assistant professor of neuroscience and a member of the BIG center. Kipnis also saluted the “phenomenal” surgical skills of Igor Smirnov, a research associate in the Kipnis lab whose work was critical to the imaging success of the study.

Alzheimer’s, Autism, MS and Beyond

The unexpected presence of the lymphatic vessels raises a tremendous number of questions that now need answers, both about the workings of the brain and the diseases that plague it. For example, take Alzheimer’s disease. “In Alzheimer’s, there are accumulations of big protein chunks in the brain,” Kipnis said. “We think they may be accumulating in the brain because they’re not being efficiently removed by these vessels.” He noted that the vessels look different with age, so the role they play in aging is another avenue to explore. And there’s an enormous array of other neurological diseases, from autism to multiple sclerosis, that must be reconsidered in light of the presence of something science insisted did not exist.

Published in Nature

The findings have been published online by the prestigious journal Nature and will appear in a forthcoming print edition. The article was authored by Louveau, Smirnov, Timothy J. Keyes, Jacob D. Eccles, Sherin J. Rouhani, J. David Peske, Noel C. Derecki, David Castle, James W. Mandell, Lee, Harris and Kipnis.


The study was funded by National Institutes of Health grants R01AG034113 and R01NS061973. Louveau was a fellow of Fondation pour la Recherche Medicale.

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

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25 Secrets of People with chronic Illness

25 Secrets of People With Chronic Illnesses
Elisabeth Brentano By Elisabeth Brentano Feb 11, 2016
This article discusses aGeneral topic in our community

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Nearly 133 million Americans have some sort of chronic illness, and that number is expected to reach 157 million by 2020, according to data on the Invisible Illness Week website.

From exhaustion to migraines to fatigue, many chronic illness symptoms aren’t visible to the naked eye, which makes them even more difficult to diagnose — and understand.

With a growing number of people affected by chronic illnesses like fibromyalgia, arthritis, Lyme disease, Crohn’s disease and diabetes and more, it’s important to both raise awareness and let others know how to respond to the needs of individuals living with these conditions.

So we asked readers in our Facebook community what truths about chronic illness they wish others understood. Here’s what they had to say:

1. “Some days you can function, some you can’t.” —Amber Wandmaker

Woman on beach

2. “I’m not lazy. I’m in pain, exhausted and quite possibly depressed because I feel useless and cannot make others understand what I go through on a daily basis.” —Jodie Farber Brubacher

3. “It’s not in my head.” —Christine Olson Smith

Writing on notepad

4. “When I’m pushing through… I’m really pushing myself too hard.” —Debra Declue

5. “Just because you can’t see it doesn’t mean it’s not real.” —Rhonda Miller-Solomon

Magnifying glass, close-up, cropped

6. “Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to ‘get better.’” —Joan Elizabeth

7. “A good day for people with chronic pain… is often just ‘less of a bad day.’” —Ann Webb Bradford

8. “Being immune compromised/suppressed isn’t a game; it’s dangerous. When I say I can’t get sick, I’m not being paranoid; I’m being careful. Life’s no good when you’re dead!” —Arianna Nyswonger

9. “I’ve become an expert on hiding my pain from everyone.” —Beth Cox Harrell

Woman looking through blinds

10. “Chronic illness often comes in multiple versions; treating one can mean making another one worse.” —Zoann Murphy

11. “I can’t remember what ‘well’ feels like.” —Sandra Williams

12. “Good can change to bad in a matter of minutes. There are good days and bad days, but there are also good hours and bad hours, good minutes and bad minutes. Chronic illness does not see or understand time.” —Deanna Guarino-Embry

Clock on wall

13. “There’s no such thing as ‘too young;’ we can’t just show out bodies ID and tell the illness to come back in 10-20 years!” —Jen Andrew

14. “It doesn’t get better. It is this way. Every day. Forever. If you’re in my life, please don’t ask me if I’m feeling ‘better’ today.” —Wendy Rose

Old man feeling sick

15. “We shouldn’t be treated like drug addicts or hypochondriacs and denied the care we truly need.” —Amy Brandborg

16. “I live a double life. What you see when I am at work: someone who is well put together, always dependable, smiling, will always tell you she is doing fine. My reality: I’m a mess, in so much pain, my smiles are forced, sometimes I have to find a quiet place to cry. But it’s much easier for me to fake it because coworkers don’t want to hear my truth day after day.” —Amber Weller

Woman in front of mirror

17. “A ‘good attitude’ doesn’t take away pain or improve mobility. I am still human and I will have days when I just can’t drum up that ‘good attitude.’” —Vicki Gomes Petilli

Woman standing in field barefoot

18. “I didn’t do this to myself. I didn’t not pray hard enough or believe hard enough. I didn’t not eat well enough or not exercise enough.” —Barb Silvestro

19. “It hurts to be forgotten because we have said no to so many events, parties, family gatherings, shopping trips, etc. I want them to still ask just so I know they are still thinking of me.” —Victoria Sinclair

Upset woman with grey hair

20. “There is no magic cure. I don’t want to be sick, but this is my reality. I can’t wish it away or cleanse it away or take supplements because your sister’s boyfriend’s mother did.” —Christina Marroquin-Mauricio

Spoon with heart in it

21. “People don’t choose to feel horrible every day and lose the person they used to be.” –Caitlin Hoechst

22. “What I can do one day I might not be able to do the next.” —Becky Rider

23. “I’m not making it up. If I wanted to fake an illness, I would choose something that people would believe!” —Faith Merryn

Upset man

24. “My downtime doesn’t mean I’m depressed or isolating. It’s a time for me to heal and recharge.” —Kate Wilhelmi

25. “My illness does not define me, my dreams or who I am!” —Judy Fox Berryan

Woman on the beach

What’s one truth about chronic illness you wish others understood? Let us know in the comments below. And be sure to visit our new Facebook page, Chronic Illness on The Mighty.

All images via ThinkStock

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