Because many with rarely diagnosed and invisible illnesses must go through months to years of appointments and testing to get a diagnosis, I often think about why we fight for one despite the constant obstacles and hurdles. For many illnesses, especially rare and complicated ones, time to diagnosis can take six years or more. It’s an arduous journey for so many of us.

I suddenly got very ill while I was working on a PhD in 2010, and since then much of my life has been spent living on what I call the Hamster Wheel of Diagnosis: make an appointment (which could take months to a year to get), do a test, make another appointment to go over the results, do another test, another appointment, then get shuffled off to another specialist to start the process over.

With fragmented care and limited knowledge about rare conditions, Western medicine is often not well-equipped to deal with patients with complex conditions or co-morbidities. I just keep running on that wheel hoping it will eventually lead to somewhere, to more answers, to a better quality of life. I’ve filled so many vials of blood, had giant needles placed in my body, been tilted on tables, breathed into so many tubes and have been told “it’s all in your head” by so many doctors, I feel like I could start my own medical mystery world tour. Being told “it’s all your head” by medical professionals is a common experience for many with invisible illnesses, especially when you are young and female.

After either being dismissed by so many doctors or told my symptoms were outside of a doctor’s expertise, I was finally diagnosed with POTS (postural orthostatic tachycardia syndrome), a subset of dysautonomia, in 2012. I thought I had finally made it
off the Hamster Wheel. But in early 2013, I started having other mysterious symptoms: difficulty breathing, difficulty walking, weakness, struggling to speak while I was teaching. When I mentioned my walking issue to my doctor’s nurse practitioner, she told me I was imagining it. She actually chuckled as her initial response. I didn’t find it particularly funny. Yet, I internalized her response, and I tried to believe that I was imagining it. But then I couldn’t get around and had to get a cane. Then a walker. Then a wheelchair.

Hey, every 30-something goes through that difficult period of trying to figure out life while losing their mobility, right? Well, maybe not. I wasn’t imagining this.

Eventually my neurologist tested me for myasthenia gravis and I tested positive for it, but
that is only a tentative diagnosis right now. I have endured many tests since then to see if that is my official label. I’m still on the Hamster Wheel of Diagnosis, but in that time I have been waiting for an official diagnosis, I have had to give up my career as a professor, have become home-bound and now have to use a wheelchair when I leave the house. Since diagnosis is often a precursor to treatment, the years spent on the Hamster Wheel can have very real, even devastating consequences.

Stefani at a doctor's appointment
Stefani at a doctor’s appointment

The truth is the drive to give up while seeking a diagnosis is incredibly powerful. The life on the Hamster Wheel is exhausting, expensive and disheartening. It takes an arsenal of hope, determination and rugged stubbornness to fend off that drive to give up.

Over the years, I have often asked myself, why does a diagnosis matter? Why do I keep fighting a battle that never seems to end? It’s important to remind yourself sometimes not just why a diagnosis is important but what you are fighting for. You may be fighting for a better quality of life, for your children, for your family, for your career, for your own sanity. Not many people want to be pigeon-holed and labeled. When you are desperately ill, that label is a like a trophy, engraved with the words “I Was Right!” Some never get a complete diagnosis and must suffer the costs of uncertainty long-term, but many of these patients still search for a label for their suffering. A label of an official diagnosis can matter for many reasons.

Official Recognition and Documentation

Insurance companies and our medical system operate in a black and white world, but there are some of us who live permanently in the grey area in between. There is nothing cut and dry about rare, complex conditions. Yet, a label and diagnosis fit into that tiny square in many medical forms titled “medical conditions” (good luck fitting more than one condition in that square).

Having to list a grab bag of symptoms doesn’t hold much weight in their world. Sometimes a grab bag of symptoms leads doctors or medical professionals to give a patient a psychiatric label such as “depressed” or “anxiety” instead. It’s easier than admitting they don’t know sometimes or investigating further. The irony is that depression and anxiety often are an effect of disabling symptoms met with invalidation, not the cause.

There can be serious ramifications from this invalidation. Misdiagnosed psychiatric labels can be put in patient files, making it difficult for a patient to overcome this invalidation and be taken seriously by doctors. A lack of diagnosis could lead to patients not getting approved for needed tests or treatment options. It could mean a patient cannot get needed accommodations at work. It could impede accessibility to essential services for the chronically ill and disabled. For those who are so disabled that they are unable to go to work or attend school, an official diagnosis could be a life line. This could help them qualify for disability or other types of assistance. For many, a diagnosis is essential for these practical concerns.

Often when you are chronically ill, you will encounter many doctors who do not know your medical history, you will have to fill out stacks of paperwork and you will need to communicate your needs to the medically uninitiated (employers, family members, etc). A diagnosis provides a concise explanation. 

There’s nothing quite like having an entire Wikipedia or Mayo Clinic page dedicated to your rare condition that you can direct them to when you have a diagnosis. The label leads to vital information and resources. It provides you with a prognosis and information to understand your body. A grab bag of symptoms rarely does. That leads to fruitless Internet searches and typing into Google “why am I falling apart?” A diagnosis can matter.     

Validation

A diagnosis has practical financial, legal and bureaucratic concerns as I mentioned above, but it also assuages the psyche of those who are desperately ill and have been denied proper care and treatment because of misdiagnosis or invalidation.

When I was finally diagnosed with POTS, I wanted to sing in the streets. After being told by so many doctors that I was wrong, I was finally right. When you get a diagnosis, it’s like reading a prequel to your life. The plot holes, disjointed timelines and weird flashbacks of your story start to make sense.  I have learned that sometimes you will still encounter invalidation and continue to have to “prove” you are ill, yet you can wield a clinical diagnosis like a weapon against these forces. You aren’t wrong. A diagnosis can matter. 

Treatment

A diagnosis can lead to treatment options where there were none before. Often with rare or rarely diagnosed conditions, there are no specific treatment options created to treat or cure the disease. Instead, medical professionals use “off-label” treatments, meaning treatments designed for other conditions but may have beneficial side effects for a rare disease. Yet, without a diagnosis or general idea of a patient’s condition, patients may not even have access to “off-label” treatments.  Treatment options can provide hope and can lead to a better quality of life. A diagnosis can matter.

Huffington Post posted an article listing other, innovative avenues for patients with complex conditions to pursue when you are trapped on the Hamster Wheel of Diagnosis.

The Diagnosis Is Not the Endgame

I have come to realize that getting a diagnosis and ultimately managing chronic conditions are a process. Even once a patient manages to get off the Hamster Wheel and finally begins treatment, the process isn’t over. Treatment takes time and often a significant amount of trial and error. Sometimes a patient’s diagnosis can change. It’s important to be patient with the process even after you achieve a diagnosis.

Most importantly, I try to remember that this process and my illnesses do not define me. They are a facet of my identity and life but are not the sum of my experiences. A diagnosis can matter, but do not surrender the ultimate goal, which is the determination to improve your quality of life and embrace that life with your spirit intact despite the challenges of living with rare or rarely diagnosed conditions. 

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

Follow this journey on Kind of Broken: Lifestyles of the Young, Sick, and Fabulous.

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Postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia, is a chronic illness that affects more people than multiple sclerosis and Parkinson’s disease and causes quality of life analogous to congestive heart failure. Yet it is incredibly unknown and chronically misdiagnosed as anxiety or “all in the patient’s head.”

Here are some ways to help someone you love with POTS:

We feel a lot. A lot of the time we may be struggling with guilt, depression or other various stages of dysautonomia. We are constantly aware of how the dishes aren’t done, that we bailed on your invite again, and that — at least for the time being — it feels like the person we used to be is gone.

This doesn’t mean we can’t be, or aren’t, happy! We’re still the same person, just under far different circumstances. However, just because we look or sound or seem OK doesn’t mean we aren’t in pain or exhausted or didn’t just throw up in the bathroom because our blood pressure suddenly dropped dangerously low.

We are more than our illness. Talk to us about things we love and enjoy. Treat us as a person because we need to be seen as one. We aren’t breakable, but sometimes we aren’t entirely whole. And we need to be reminded we still are someone even with this illness.

Ask questions. “How does brain fog make you feel?” “What do I get you if you faint?” “What can I do to help?” It shows us you care, that you want to learn, and it validates what we’re feeling. This automatically puts you far ahead of 90 percent of the doctors we come into contact with.

Help us find something we love that we can do despite the debilitating fatigue. When I was extremely ill, I was too tired to concentrate on books or make it through entire movies. But I rekindled a love for photography (even though my pictures consisted of the four corners of my bedroom for two years) and it kept me going. Knitting, drawing, coloring — anything that can show us we are still human and can still contribute to ourselves and the world.

Use your judgment to help encourage us and remind us to take it easy on ourselves. Point out the little things we’ve accomplished because seeing progress helps us keep fighting (such as, “I don’t blame you for being tired, you [walked up the stairs on your own today]! Sounds like it’s time for some well-deserved rest.”).

Help get us outside or open up a window. Not when it’s sweltering hot or freezing, of course. And we may only be able to handle it for a few minutes, but feeling the sun on our faces and fresh air in our lungs can be some of the best medicine.

Realize the things that make us happy (like being outside for a little bit) can also make us sad because they remind us of our limitations. Be cognizant of this.

We need to learn to listen to our bodies. This can be especially hard for those of us who have spent our lives pushing beyond our limits and never slowing down. Remind us that we aren’t weak, that it is OK to take care of ourselves and put our needs in front of other things. This also includes letting go of emotions, thoughts, etc. that do not serve us. I have found a lot of people with POTS to be extremely sensitive people. We have to learn new ways to manage stress and our own active minds. Talk this through with us. Come up with a game plan together. Be our teammate, not our keeper.

You won’t always know exactly what to say or what we need to hear. That’s OK, just tell us that. Even though it can be difficult for us, we must communicate our needs to you and learn to ask for help as well. Plus, that’s much easier than someone just disappearing on us or pretending nothing is going on.

Love us. We feel bad about all the sh*t we put you through. Remind us that you are your own person and that you are choosing to stay with us.

Tell us it’s OK. It’s OK to be tired. It’s OK the dishes aren’t done. It’s OK you didn’t get to vacuuming. It’s all OK because no matter how strong we are — mentally and physically — or how long we’ve been managing with POTS, it still throws us for a loop. We still beat ourselves up. Remind us we don’t have to be strong all the time, that we aren’t lazy and that it’s OK to be sad as long as we eventually get back up and keep fighting.

And with your help, we will.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] 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.


When you are the parent of a child with disabilities, you may often have friends forward you video clips or stories of children dealing with similar issues. This to me is generally a positive thing. It means that for one, someone cares enough to send you the clip or story. For another, it means your efforts to spread awareness of the condition(s) your child has are reaching people.

Recently, there was a really cool video clip sent to me of a service dog doing tasks for her handler who has postural orthostatic tachycardia syndrome (POTS). I was very impressed to see this intelligent dog helping out a young lady who needed the help.

I understand why the video was sent to me — my 13-year-old daughter, Carolina, has POTS. She was diagnosed months ago, and it has significantly impacted all of our lives. It causes elevated heart rate and she becomes really dizzy, very weak, nauseated, and she loses her peripheral vision. She has to drink two liters of water daily and eat a lot of salt to help lessen her symptoms, plus she takes medications to help as well. Unfortunately they do not take away the symptoms but do help somewhat.

Carolina also has Ehlers-Danlos syndrome hypermobility type (EDS) and it is a connective tissue disorder that causes a lot of pain and other issues for her.

Carolina is ambulatory and still tries to be physically active. She does wind up having POTS symptoms frequently, though, and often has to sit down or lie down. If we go out and she starts having tachycardia or increased symptoms, we often find a chair for her or a scooter if we are in a place that has one. If there is a lot of walking planned, we know she either needs a scooter or someone to push her in a wheelchair. We are a “medically complicated” family of four so her father and I often use mobility aids for distances or shopping ourselves, and her younger brother has some of the same issues.

girl lying on towel at beach

It is frustrating for Carolina for her body to be slowing her down. Of course, her father and I want to do anything we can to help her gain back some of her sparkle as well as help her physically. I saw this video of the young woman and her dog, and since then I have been considering and then quietly looking into the prospect of Carolina getting a service dog. We do need to narrow down the field to breeds such as the goldendoodle or standard poodle, as my son has allergies. I am still learning about all of the tasks a service dog could do that would specifically benefit my daughter. It can be trained to open the fridge and bring water (remember she has to drink two liters of water daily), bring packaged snacks, bring a blanket, retrieve dropped objects (she gets lightheaded bending over plus her back hurts from EDS), open doors, and more I am still learning about. Carolina would greatly benefit from those tasks being done for her. I am told that only some service dogs have the instinct to alert to cardiac changes (such as when she is having tachycardia) but that it is at least a possibility. It would be miraculous to have a dog that could alert Carolina that she is beginning a tachycardia episode so she could lie down and hydrate, because Carolina is young and doesn’t sometimes realize it is happening until she feels dizzy, nauseated, and loses her peripheral vision.  So far she hasn’t fainted but she has seen spots and been really close to it.

Here is the dilemma, which honestly should not be one at all. There will be those who see her as “not that kind of sick.” Invisible illnesses can be so infuriating to deal with that way. I have been researching service dog agencies that train them, because the training is a huge undertaking that I know would be best not handled by us. One well known and highly recommended agency requires a $17,000 fee for the dog plus the training. Thank goodness the agency does give tips on fundraising so that families can ask for public support to help with the cost.

I have gone through a lot as a mom of children with medical issues, and while dealing with my own disabilities. First, I was dumbfounded that anyone wouldn’t believe what the doctors said my children had when they were diagnosed with things when they were little. Then I was hurt. I learned it happens with a lot of families dealing with special needs – that family and friends can be very unsupportive. Then I went through years of being insecure and not trusting my own opinions about lots of things and often asking others for everything from my hairstyles to proofreading help to medical opinions. I was not good at making firm decisions during that time. I was struggling with a lot of things and truly felt adrift. I was very depressed even though I didn’t see it that way.

Then came a decision where I felt I didn’t really need to ask for opinions, but I did anyway, because that was what I was used to doing. Turns out there was a huge misunderstanding, but it led me to realize I should never have felt the need to ask. I also realized I had grown as a person, and as a mother. My instincts are much stronger and I am much more grounded. I only actually needed to discuss things with my husband in that instance, and he agreed with me and had my back.

Now back to the decision about whether to apply for a service dog for my daughter. I have had the worry that naysayers who don’t see her at her worst will form opinions about me. I have thought some will see me as a gold digger, or “exploiting my child” even though this is something she could greatly benefit from.

girl lying on couch

I have spoken with my daughter about the fact that it will cause others to possibly view her differently. It was her words and opinion that snapped me back. “Mama, I don’t care what others think.” She has the most amazing personality. She does care about maintaining a good reputation, but if someone misunderstands or chooses to find fault in a situation where there is none, she says she doesn’t care and lets that junk go. She does get angry if someone is dismissive of her health conditions, but even at 13 she is quick to educate them, and do it accurately and eloquently. She does care about the opinions of those that are closest to her and she has strong faith so she cares about pleasing our Heavenly Father, but she says she doesn’t worry about the opinions of others that aren’t inside our situation. Carolina knows she could be helped greatly by having a service dog, so that is what matters.

That is also what matters to me. I have prayed about it, spoken with my husband about it, and spoken with Carolina about it. We are beginning the application process, and I am secure in our decision. That feels very, very good.

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For the past several years, chronic illness has kept me on the couch during New Year’s celebrations. This year, I hoped for a different picture: spending the holiday at a cabin in the woods with my wonderful, patient boyfriend (of almost a year!) and our close friends. Instead, I will be on the couch again.

Due to my ongoing struggles with kidney disease and POTS (postural orthostatic tachycardia syndrome), I am dizzy and swollen as I write this article. I’m disappointed. I’m a little angry. I’m uncertain about how this year will look, how I will get past this illness flare, how my boyfriend will respond when he learns that — once again — I must say “no” to one of our beloved adventures.

For these reasons, I’m feeling the need to remind myself of what I’ve learned through painstaking doctor visits, midnight reflection when I’m up with a blood pressure spike and more nights in than I can count.

In fact, I’m feeling so radical about the following ideas that I’ve decided to write them in manifesto form and share them with fellow Mighty readers in hopes that we will all remember our own intrinsic worth in the coming year.

In 2016, I’m willing to be bold about my own human value. No matter that I’ll be ringing in the new year at home, on the couch, not kissing my favorite person.

1. Dignity

The most basic yet most profound idea I learned this year (thanks, grad school!) is that recognizing human dignity can transform people’s thoughts, actions and interactions.

As a chronically ill person, I can recall many occasions when I felt my sense of dignity slipping away: physical exposure during medical procedures, obvious social difference, even people’s vocal outrage when I, at 25, parked in a handicapped space. However, I’ve learned my sense of dignity is not the same as the universal, equal dignity I share with all people alive. When I think of myself in that way, as a human being with dignity, value and legitimate needs, I am best able to treat myself well.

This year, I urge you to marinate in the idea that you are valuable on the basis of your humanity. No chronic illness, or loss of function or day in bed can change that.

2. Forgiveness

Let me be blunt — there is so much I wish I had done differently during 2015. I wish I had not pleaded so loudly for blood pressure meds in the ER on Thanksgiving. I wish I had stuck to my exercise program after moving to grad school (if I had, my POTS would be better). I wish I had been kinder to my family. I wish life was different.

OK. That’s all true. But I am letting that go.

I can’t change what has happened, and I am not so naive as to think I can change my behavior immediately after the ball drops. What can I do? I can breathe, remind myself of who I am (a human with dignity), view myself with compassion and move on.

3. Inner Life

Maya Angelou, who died two years ago only 30 minutes from where I live, gave the following advice to her son about cultivating an inner life:

“There is a place in you that you must keep inviolate, you must keep it pristine, clean, so that nobody has the right to curse you or treat you badly: nobody, no mother, no father, no wife, no husband, nobody — because that may be the place you go to when you meet god.”

As a creative person with chronic illness, I often lament that my health problems interfere with my memory and ability to make quality art, music and writing. For this reason, I cling to Ms. Angelou’s belief that maintaining an inward sense of dignity can help with social life and finding inspiration.

4. Choice

Ever since my diagnoses, I’ve wondered how other chronically ill people find the strength to endure their own pain and limitation. (For myself, as my family can tell you, I talk/complain/write a lot.)

After the first year or so of hospitalizations, nausea, pain, etc., I became allergic to the notion that I had to bear my suffering silently. What it took me longer to learn, though, is that I have a choice, at every second, about how to view and vocalize my experiences.

This year, I set the intention to hone in on each opportunity for positive choice. I want to choose connection, solidarity and giving others a chance above isolation, self-pity and skepticism.

5. Straightforwardness

I’ll keep this one brief.

As much as I pride myself on being an independent thinker, my mom is always right about one thing — don’t apologize for being sick and after that do your best.

6. Attention

One of the great assets of a life with chronic illness is time. While I’m not thrilled about the amount of time I spend in home or hospital beds, I do place high value on my opportunity to develop the skill of attention.

In 2016, I want to develop more openness to the people I love, as well as sensitivity to even the tiniest beauties in my limited world.

7. Freedom

Here’s the final, and most important, idea I intend to prioritize going into 2016.

It’s that, regardless of my chronic illness, I am free to choose the best life possible under the circumstances. I am free to live with dignity, if I let myself.

And so are you.


Dear friends and loved ones of those with chronic illness,

I’ve been struggling with chronic illness for about three years now. I had health problems before, but three years ago they began to take over my life. Ever since then, I’ve been on a slight but steady decline. I used to go out with friends a lot (even just to hang out), but going out slowly became something that wasn’t worth the reverberation. 

My friends began to say things to me like, “I would’ve invited you, but it doesn’t start until 11 at night.” I couldn’t blame them for not inviting me; it really would’ve been a waste of their energy. It’s not like I would’ve gone — 11 is way too late for me to be arriving somewhere. Many people my age (I’m 22) go out at 11 or even 12. I try to be asleep between 10 and 12 (like snoring asleep, not I-just-got-home asleep). My friends stay up until at least 2, but they’re the healthy, I-can-live-off-five-hours-of-sleep type of people. The issue is they think I want eight to 10 hours of sleep. They think I want to wake up early and go to bed early. They think I want to stay home instead of going out with them. They think I want to be the sober one. But none of their beliefs regarding what I want are true.

Who wouldn’t want to go out with their friends, have a few drinks and feel like, for one night, you have zero cares in the world? Who wouldn’t want to experience their 20s? I’m sure at this point you’re thinking OK, I don’t get it, what’s the big deal? Why doesn’t she just go out and do it? To a healthy 22-year-old, the phrase “just do it” is simple and straightforward. When you’re sick, however, you can’t always “just do” things. I constantly have to think about the repercussions of every action I take. I have to think about how much energy it will take, what the effect will be if I overdo it and overflow into using up tomorrow’s energy. When you’re sick, you constantly and simultaneously must think about the past, present and future. How has your body reacted to it in the past? Do you feel up to doing it now? How will I feel about having done this in five hours? Twelve? Tomorrow?

To those of you who think I don’t want to come to your party or go to your house or meet you at the bar, please know that’s not at all the case. I really do want to come and celebrate with you and have a good time and be a “normal” 22-year-old, but what you don’t know is what doing so would actually mean to me. When I overdo it, my POTS (postural orthostatic tachycardia syndrome) acts up, and I can’t stand without my vision blacking out and me starting to pass out. My EDS (Ehlers-Danlos syndrome) makes all of my joints hurt, from head to toe, and the repeated stabbing sensation in my currently obstructed left kidney hurts even more than normal. I’ll be couch-locked from the pain, unable to sit up, and more likely than not the exhaustion will rid me of any appetite and replace it with an intense bout of nausea. If I chose to go out, I have to deal physically with the consequences of my actions.

I understand my lack of presence may cause you to be upset with me, but please don’t take it personally. It’s not that I don’t want to be there for you; it’s that sometimes, when you’re chronically ill, you have to be there for yourself.

Love,

Shayna A Leeds

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


My health took a bad turn last October. The biggest issue was syncope, or passing out. It came literally out of nowhere. It was scary for myself and those who loved me. We wanted answers. And naturally when you’re sick and want answers, you look to doctors. Little did I know finding a doctor who would look past my mental illnesses would be my biggest obstacle.

I’m the first to tell you I have mental health problems, including severe depression, anxiety and bipolar disorder. I’ve experienced them nearly all of my life. So when my doctors ran basic tests and couldn’t find anything wrong, they began to blame my passing out, dizziness, vomiting, severe pain and much more on my psychological issues. “It’s psychosomatic,” I heard again and again. 

At first, I was stunned and hurt. I knew in my heart there was something seriously wrong, but I couldn’t get a doctor to listen. Over time it became a routine: I would go to a new doctor, he/she would look at previous doctors’ notes, see the word “psychosomatic” and, without running any new tests, would agree. I’d look for a new doctor just for the same thing to happen again. It was frustrating, not to mention a major waste of time and money.

It took eight long months to hear the words, “It’s not all in your head.” Finally, I was diagnosed with postural orthostatic tachycardia syndrome, or POTS. Finally having a diagnosis lifted a major weight off my chest, but I was still upset with my previous doctors for blaming my psychological issues. Now, looking back, here’s what I want to say to the doctors who told me my physical problems were psychological:

I’m no longer angry with you. I actually want to thank you. Yes, thank you.

Thank you for not believing me so I learned to count on myself.

Thank you for dropping me as a patient so I would have to fight harder.

Thank you for telling me things were psychological to make me feel crazy enough to never give up.

Every setback made me realize how important I am. Every time I heard the word “psychosomatic” made me realize I deserved better than just being labeled mentally ill. This journey has made me love myself and see my self-worth. I now know how much drive I have in me and how little I tolerate. I deserve the best treatment. 

I’ve since been diagnosed with many more very real health problems, and currently have a great team of doctors doing everything they can to give me my health back. I never would have found them had I not gone through so many doctors like you, so thank you.

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