Disability sign on a restroom door.

What People Don't See When I Walk Into the Accessible Restroom Stall

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There have been two occasions in my life where I have had a legitimate cause to use disabled accessible toilets in public. The first, nearly 10 years ago, was when I dislocated my knee and ruined my ligaments skiing. I was on crutches and couldn’t bend my left leg, meaning I had to leave it sticking out in front when I sat down. I’m a tall girl and it was just too cramped for me to safely and comfortably use a public toilet. Hobbling along on my crutches, I “happily” entered the disabled toilet cubicle, did my business and left again. No one batted an eyelid, and indeed some people gave me a knowing, understanding look; one person even held the door open for me. These people — these strangers — could see my (temporary) disability and understood why I might need to use the disabled toilet. No questions asked.

The second time was a couple of days ago. Except this time I had no crutches. I had no wheelchair, no mobility aid, no outward sign that I might need to use the accessible stall. The only clue was hidden away in my handbag; a pouch bursting with hygiene products, antibacterial wipes, incontinence supplies, anesthetic gels and spare caps. You see, 10 days ago I was admitted to the emergency room with acute urinary retention – basically I was, for reasons unknown, unable to pee by myself. I hadn’t passed water for nearly 24 hours and was in agony. I was fitted with a catheter and sent on my way. Having not had a catheter before, this took some getting used to — emptying the leg-bag, and then when I got a valve, learning to empty my bladder without spraying pee everywhere! In my own bathroom at home, this was easy. At home, I have lots of space. I have ledges where I can put things while I work systematically through the process to enable me to pee. In public toilets, I don’t have that space. I don’t have the surfaces I can clean and put my things on. I don’t have the quiet which I need to be able to hear when my bladder has stopped emptying because I can’t feel when it’s empty. And so I need to use the disabled toilets.

The problem with this is that because people can’t see my (temporary) disability, they instantly believe I am trying to cut in line, or be lazy, or using something which I am not entitled to. This judgment is so acutely felt that despite really needing to use the disabled toilet, I feel shamed into using the regular ones, which aren’t suitable for my needs. I am so worried about contamination, or space, or emptying my bladder that I cannot finish completely and have to leave still needing to pee.

I am lucky though. For me, this situation will hopefully be temporary and last at most a few months. My other invisible illnesses — i.e. my mental health — do not require me to use a disabled toilet. But there are plenty of people whose invisible illness does require them to use a disabled toilet. My friend who has severe IBS frequently requires use of RADAR key controlled bathrooms (a RADAR key is issued in the U.K. to people who need to use public disabled toilets which are only accessible with a special key to stop others abusing them), but people who look at her wouldn’t understand why. And my fortunately temporary situation has just hammered home how quick people are to judge and tut, to shame and bad-mouth people without knowing the full truth.

I have an idea that if I were to be challenged over my disabled bathroom use, I would calmly ask the person whether they would like to see my catheter and explain why I have to use that particular bathroom. I really hope that in that situation I would be able to stand up for myself, and by proxy for everyone else who has had their invisible illness shamed. And if I can’t, then please do it for me. Do not let yourself be bullied by ignorant people who don’t know any better. Educate them, explain, do not be embarrassed. I can only do a tiny bit to help end the stigma behind invisible illnesses, but together we are strong, and together we are one.

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Thinkstock photo by Design Pics.

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Man Uses T-Shirt and Disney World Trip to Highlight His Need for a Kidney

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After years of living with chronic kidney disease, one man used a T-shirt and a trip to Walt Disney World to let the world know about the hard to find treatment he’s searching for.

On Sunday, a woman named Rocio Yanira Sandoval came across Robert Leibowitz at the Magic Kingdom, who was wearing a shirt that said “In need of kidney O positive” and a phone number. Sandoval and her husband asked if they could take a photo and share it online, and as she described, Leibowitz “turned around with the biggest smile, so grateful and said ‘Yes please!’ He gave us both a hug and said ‘Please share this with the world.'”

Sandoval posted the photo on Facebook, initially thinking Leibowitz’s son, who was sitting in a wheelchair while his dad pushed, was the one in need of a kidney. But after Sandoval called Leibowitz to tell him that people had been sharing her post, she learned it was actually Leibowitz who needed the kidney (he had been using the wheelchair himself but was stretching his legs when Sandoval approached him).

On Tuesday Juan and I celebrated his birthday at Magic Kingdom. On our way out we saw this man pushing a teenage boy in…

Posted by Rocio Yanira Sandoval on Sunday, August 27, 2017

Since Sunday, the post has been shared 87,000 times. Leibowitz told Babble that he’s received over 200 texts from people who have O positive blood, the most common blood type, and want to be tested as potential kidney matches.

Leibowitz said he had his first kidney infection when he was 12 years old and healed completely, but when he was 40, he learned that his kidneys would eventually fail. He’s 60 years old now and receives dialysis treatments four hours a day, three times a week and is on five different lists for a kidney donor.

According to data from the Organ Procurement and Transplantation Network, there are currently over 96,000 people on the kidney transplant waiting list, but in 2016, only around 19,000 transplants performed.

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This Is What Can Happen When You Make Fun of Someone's Chronic Pain

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When you’ve experienced chronic pain your entire life you may begin to believe that you need to hide it as best you can.

In my late teens, at work, before my congenital kidney disease was diagnosed, I was in so much pain that I was walking with a sliding shuffle/limp because I couldn’t raise my leg and foot without causing agony in my kidney. I had always had this pain, and was told it was gas, so it didn’t really occur to me to not just power through. I continued working two jobs, which made my health and my pain significantly worse. I could usually hide my pain, I had a life time of practice, but this was too severe.

It got to the point where I couldn’t hide it as easily over the period of a month. Well, one day, I spotted my coworkers, who I thought were my friends, mimicking me. Mocking how I walked and how I grabbed and held my side to keep the painful area from moving as I walked.

I was hurt and mortified. The exaggerated, rude motions they were making and the sour grimaces on their faces made me want to cry. I was trying so hard to get through work every day. I was doing my job extremely well, was rising in ranks, despite being in agony, yet here were my coworkers blatantly making fun of me. Making fun of my pain.

That was the day I became a complete pro at hiding my pain. I would walk in a way that caused me agony, because I didn’t want to be noticed. I would go and crouch and hide in corners when I couldn’t take the pain. I learned how to smile, joke around and be normal, all while my kidney was extremely infected and slowly becoming obstructed, off and on, by an enormous, moving kidney stone.

Even then, I waited weeks, until I was vomiting and crying, before going to the hospital. I had always been told it was gas, and that I was just a wimp when it came to pain. I was a teen girl, embarrassed to go to the ER for intestinal gas pain. I was afraid I’d be mocked there, too.

I wasn’t mocked, but by the time I went to the hospital, hiding my pain had become second nature. I thought I was expressing my pain. I told them it was extremely painful, but I was sent home by the ER doctor, despite really horrible urine results, because I “wasn’t in enough pain for it to be a kidney stone or anything serious.” They said it was a bladder infection. Sent me home with no pain meds and antibiotics.

I started hallucinating after I got home. Vomiting, screaming and hallucinating. I went back to the ER. They did a kidney scan, and then I heard a doctor raising her voice as nurses kept pumping me full of more and more morphine, to try to ease my pain and stop my screaming. The doctor was freaking out that I had been sent home previously. My urine had had so much blood and protein in it that I discovered that’s why the first doctor asked me five times if I was on my period. I had told her no, but she seemed to think I was lying. I then heard the doctor making a complaint report against the previous doctor who had sent me home, hours before. I heard that I could have died. My kidney had shut down and was extremely swollen from all the urine stuck inside of it. It also became very infected in the hours between being sent home and going back. I also learned that I hadn’t even had any infection in my urine the first time around.

Then, an ambulance came and rushed me to another hospital where the urologists specialize, and I had emergency surgery.

I could have died, I think partly because I became too skilled at hiding my pain. It became natural, the norm, to give an outward facade of being fine.

I still struggle with showing my pain to others. I try, but I’ve had a few other instances where my inability to express it the way a typical person does has caused doctors to miss when I needed other emergency surgeries.

Please. Don’t make fun of how people look or walk when they are in pain. It can have devastating consequences. It can hurt both emotionally and physically.

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Thinkstock photo by Tishchenko

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How the Stigma of Opioid Medication Hurts Those With Severe Chronic Pain

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I understand why the news talks about the opioid crisis in the way it does. It is very real, very serious and needs to be addressed.

However, they are doing a disservice to patients who require opioid pain medication just to make it through the severe pain they have every single day.

Not all patients abuse, misuse or turn to street drugs.

I have required narcotic medication for more than a decade. I have never doctor-hopped. I have never been a drug-seeker at hospitals. I’ve never abused my medication or taken more than I am supposed to. I am responsible and take it as prescribed, just as I take my other medication for my health issues.

The chronic pain specialists I have seen have said that the 30 percent pain relief I get from narcotics is the most I can ever expect to get. Because kidney pain is just that bad. Opiates can’t even help 50 percent of my pain. But, with how painful chronic kidney stones are, you can bet I am extremely grateful for that 30 percent of pain they ease for me.

Most people have heard about how painful kidney stones are. I have a kidney disease that I was born with which causes me to constantly make kidney stones. I pass an enormous amount of tiny ones on a regular basis and have needed emergency surgery on some larger ones.

I also get chronic kidney infections, which are extremely painful as well.

As it is, even with strong pain medication, I have days where I just can’t handle the pain. I truly don’t know how I would have made it through the last decade without pain control. I would not have wanted to live. The pain is unbearable. It is so severe.

 

Not everyone is irresponsible with their medication. Some people are. They need help and understanding. But, patients like myself who are not abusing these medications are being treated like addicts by the people who watch a news program or read an article that talks about how every patient is an abuser.

I don’t tell people what meds I take because I’ve sat in a room with acquaintances, listening to them all talk about how no one needs opioids. That they are never necessary. That all patients abuse them and turn to street drugs.

A stigma has been created and is being nourished. I have to hide that I take medication, lest I be judged and treated poorly. Yet, none of these people talking down about patients who take narcotics have any clue that I take pain medication. Why? Because I am never high. I despise feeling loopy or out of control. I don’t take enough to impair me. I take enough to take the edge off of my severe, daily, constant pain.

Please, the next time you go to judge all people who take opioid medications because of something you saw or read about, think about what you are doing. You may be talking down about someone who is sitting right beside you.

It’s happened to me.

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Thinkstock photo via smartstock.

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What I'm Thankful for in the Midst of My Rare Kidney Disease

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I have a disease that is commonly referred to as focal segmental glomerulsclorosis (FSGS). It’s a kidney disease, a horrible one. In 2013 it changed my life forever. From December of that same year I would have no kidney function and would require frequent dialysis for the rest of my life. I’d never been in the hospital or even had a blood test. It’s strange how quickly a life can turn upside down.

You may think I’d be living in a deep depressive state. It’s true that for the past three years I’ve struggled with my mental health. I’m willing to admit that because for a long time, I struggled by myself and didn’t know how to talk to anybody about this strange, rare disease I had. I think when it’s a rare disease, you are thrown into an even deeper hole of people seemingly having no investment in researching your condition at the level they would with a more common disease, and that can be really sad.

Surprisingly, despite every bad thing about my circumstance, I am quite grateful. Here are the reasons why.

1. Medicine

If it wasn’t for the fairly modern invention of peritoneal dialysis, I would not be alive today to write this. It astounds me that before the late 1980’s, it was a death sentence to have what has afflicted me for over three years now. I do hope that kidney medicine advances substantially, though, as this is the only option for me to once again have a healthy life. It will take the invention of some kind of artificial kidney that can be implanted into me like a kidney transplant is so that the biological impacts of scarring cannot affect the new organ. At the moment they are developing medicine more and more, and for this I am grateful. 3-D printed biologically grown kidneys are of no help to me. Though, I need an artificial or robotic technology that will do the job of a working kidney. In the future when this is finally possible, I will be forever grateful.

2. Family

Family is something that will always be important to me. Especially because of how much I rely on them in daily life. I am able to achieve many things I probably would not be able to because of my family. Why would I not be grateful for them? As my family grows, so does the amount of kind people who I know genuinely care for me. Wherever I go and however successful I am while I live and thrive on this planet, I hope my family will always be there sticking by me like they always have done in the hardest times of my life.

3. Talent

There is nothing better than knowing exactly what you want to do in life. For me, this has, for a long time now, been writing. I once wanted to be a doctor, a fireman, an astronaut and a zoologist, so my career prospects were quite varied. Much like any job in life though, there has to be some iota of talent that presides inside a person for them to do well. It seems that I’ve always enjoyed writing, which gives me a certain special kind of confidence that makes me determined that I will become a great writer of amazing things. I have never been that big headed or sure of myself. This is why when I look at things I have written, it cheers me up to see that this is stuff I would want to read myself. It’s always good to be your own biggest fan, it improves your personal outlook of life substantially.

4. Hope

When I would sit in silence in a dark, cold hospital room on a hard bed poised upright, I needed hope. It was the most important thing I could muster up inside my confused mind to even comprehend what was going on in my life. Hope would allow me to begin to think of the future again on the darkest of days. When I was lying there in pain thinking about whether I should “end it,” there was hope.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world

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Thinkstock Image By: fotojog

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Sarah Hyland Responds to Body-Shamers in Post on Twitter

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Sarah Hyland explains how her health challenges have affected her body and speaks out against body-shamers.

Read the full version of Sarah Hyland Responds to Body-Shamers in Post on Twitter.

Read the full transcript:

Sarah Hyland Has a Point to Make About Weight Fluctuations and Chronic Illness

The “Modern Family” star is speaking out against her body-shamers about physical changes in appearance due to an illness.

The actress has Kidney dysplasia and underwent a kidney transplant in 2012.

In her post, Hyland says she hasn’t had “the greatest year” and that it’s brought “a lot of changes and with that, physical changes.”

Hyland said she’s striving to be “as healthy as possible” and is not “promoting anorexia” as people have claimed.

She also acknowledged how hard it can be to watch her body change, calling out the effects of Prednisone.

Prednisone is a corticosteroid used to treat inflammation in the body and known for causing weight gain, including in the face.

“Am I bothered by my appearance right now?”

“Because I know that my face is swollen from medication that is saving my life.”

“For those on prednisone I know what you’re going through and I commend you sticking it out as I have.”

“Don’t let other’s comments alter any part of you! Love and positivity is what we need most.”

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