“Dancing With the Stars” released its cast list for season 25 today, and four of the 13 competitors have personal experience related to disability and illness.

Paralympian Victoria Arlen was diagnosed with transverse myelitis and acute disseminated encephalomyelitis as a teen, leaving her unable to talk or move her body for four years. Arlen eventually started talking again and gained feeling in her upper body. She used a wheelchair for almost 10 years, but started walking again a year and a half ago. She won three silver medals and one gold swimming at the London 2012 Paralympic Games.

Debbie Gibson, 80s pop icon, has been open about living with Lyme disease after being diagnosed in 2013. Gibson told People in 2014 that the disease affected her physical health as well as her cognitive skills.

Barbara Corcoran, who is most known as an investor on ‘Shark Tank,’ has dyslexia. “It made me more creative, more social and more competitive,” Corcoran said in an interview with Entrepreneur in 2014.

Violinist Lindsey Stirling has also spoken publicly, sharing her experience with anorexia. Stirling worried about gaining weight her freshman year, so she started counting calories, which eventually got out of hand.

“I’d never had self-esteem issues but as my obsession grew my self-worth became directly connected to what I ate,” she wrote for Stella Magazine in March.

Nick Lachey, the lead singer of 90s boyband 98 Degrees, hasn’t been diagnosed with a condition personally, but he advocates for autism awareness with his brother, Zac, who is on the spectrum. Lachey has helped raise funds for Autism Speaks and Micah’s Voice, a non-profit organization that provides financial and community support for families with loved ones on the spectrum.

Header image photo via Facebook.

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For 13 years I have been under the care of a psychiatrist, and more recently, a cardiologist. I’ve been going to the same dentist’s office for even longer. So it is safe to say that when I find someone I like, I’m loyal for life. They are all some of the best in the business, and I’m extremely grateful for that. My health is complex and requires constant changes and adjustments to medication to keep me going. My doctors are very smart and wise beyond their many years of practice. But it isn’t the great medical care they provide that has been the true gift they have given me, it is the way they see me – as a person, not a condition – that has truly changed my life.

 

Psychiatry was always something I thought was for other people. I didn’t think I needed it, or deserved it. It seemed like mental health was for other people. But I was 17 years old when I finally had to admit my depression and anxiety were destroying my life, and I finally sought medical help. What happened was both expected and surprising – he put me on medication. That might be expected to most, but I didn’t realize my condition warranted medication, so it was a surprise to me. I thought I was OK. And as far as I knew, that was more than acceptable.

After months of trial and error, I began to see a light I hadn’t been able to see for a very long time. My psychiatrist was always a phone call away, and he always greeted me with genuine interest in how I was doing – in life, in general. He never asked if I was OK, because OK was not good enough for him. I was a human being and, in his eyes, I deserved more than just living a life of acceptably surviving. That wasn’t good enough for him. And when he finally left his practice after 10 years with me, I was heartbroken thinking I was losing the only good doctor in existence. So he referred me to someone who found it equally unacceptable that I might be just OK. My current psychiatrist believes I deserve to feel the best I possibly can, and he doesn’t give up when times get tough – which they most certainly have over the last few years. He has never given up on me, even when I gave up on myself. For that, I am eternally grateful.

When I unexpectedly collapsed at work, the reality that I had a heart problem added a new layer to my already skeptical view of medicine. I thought I had the only good doctors on the planet. But there was one left, hiding out in the cardiology wing of the local hospital. Instead of dismissing my racing heart as “anxiety,” he asked questions about it. Soon he realized I had made a lot of changes to my life to accommodate this all-in-my-head racing heart of mine, and he started running tests. He didn’t accept the easy answer. He didn’t blame my mental health and leave it at that. He saw someone whose life was being affected by something, and he made it his mission to get to the bottom of it.

More medication trial and error meant he was getting emails from me (or panicked phone calls on occasion) about whether or not to increase the dosage, and about side effects, and anything else that came into my brain. But he was unbothered. He viewed it as part of making me well, and giving me my life back. He called to check on me after starting me on new medication. It was a phone call I wasn’t expecting, but he wanted to see how I was doing. For 20 minutes he listened, he asked questions, he cared. He doesn’t assume I’m being dramatic, or needy. He assumes if there is a problem, I am there for him to fix it. He treats me like a sister, with care and concern and a healthy dose of sarcastic wit. He never views me through the lens of being “mentally ill,” and it has meant more than he knows.

Doctors don’t just treat “patients.” We are people. Real people, with real problems, who need real solutions. But above all, we are human. We have insecurities, we get tired, we lose hope. Illness brings with it fear – but not just fears about one’s health. It brings with it fears about the doctors we are putting our lives in front of and asking for help. It’s not easy, for the patient or the doctor. But more medical professionals would do well to follow the example of the few who still view their patients as people – looking for help, for answers, but most of all, for care. Genuine care, beyond the medical textbooks and pharmaceutical samples. Care as a person, not just a name and a condition.

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Thinkstock photo via Ocskaymark.


For those who don’t follow my Facebook page, I live in Texas on the gulf coast and we were just hit by a hurricane. It made landfall hundreds of miles away, but it caused a lot of rain and I do mean a lot. My town was on the national news for receiving the most rain in the shortest amount of time, 50 inches in three days. That’s how much rain we get in an entire year, so as you can imagine, there was significant flooding. Our neighborhood was one of the few that stayed dry (though it got pretty close) so I thought staying up all night three nights in a row was the worst I was going to experience. There are a few things I didn’t think about.

Not Having Access to Medication

I had a doctor appointment scheduled during the flood event, but since the roads were under 12 feet of water I obviously didn’t make it. The office was closed so I was unable to get a prescription called in. I ran out of my most important medication and had no options for getting more. Not only was the doctor’s office closed, there were no pharmacies open either.

This is a huge problem that occurs after a natural disaster that no one talks about. Many people were in worse circumstances than I was. I’m a paranoid person so the minute the water started rising I packed an emergency bag with all my medication in it, but I was lucky because the water rose over several hours. Many of the homes flooded so fast that people were barely able to get out alive, much less with their prescription medication. Now they’re in a shelter going without because there just aren’t enough doctors to keep up with all the medical emergencies.

The Stress Takes a Huge Toll on Your Body

a street flooded after a hurricane

This was our street after the water went down. As I mentioned we had some stressful nights when the water kept rising and rising. The first night we were awake all night because the water got about two-thirds up our driveway (that doesn’t sound that high, but we are built up above the street. It was probably five or six feet of water). There were also multiple tornado warnings so we spent a lot of time huddled in the bathroom. We were on social media at 2:00 a.m. seeing our friends flood in real time. It was awful.

The second night we slept a little bit, but the third night the water came up again. My husband and I slept in shifts so we could keep an eye on the water. It was brutal on my body because I was so stressed I couldn’t relax, not to mention the sleep deprivation. I can’t remember the last time I was in so much pain.

Not Having Access to Medical Supplies

Maybe this is naive of me, but I did not realize that I wouldn’t be getting mail for weeks (as of right now, a week after the storm, there is no date set for when we’ll get mail again). I buy all my medical supplies on Amazon, and now I have no access to them. I ran out of the pads for my TENS device as well as electrodes for my Quell device. For now I’m trying to stretch my last pair of pads far beyond how they should be stretched. If I could do things over again, the minute I heard about a hurricane in the Gulf of Mexico I would order all my supplies, whether I needed them or not. Because now I have no medication and my pain devices are useless. Don’t be like me, think ahead.

You Feel Helpless When It Comes Time for Recovery

cleaning up after a hurricane

This is what flood clean-up looks like. Only picture this pile in front of every house on the street. After surviving a 1,000 year flood event without a scratch, I felt guilty. So many people around us lost absolutely everything. I wanted to go out and help, but as always my body wouldn’t let me do as much as I wanted to. I was able to help clean out two flooded houses as well as do laundry for people who were flooded, but I wanted to do more. I wanted to be out there every day helping, but I couldn’t. I hate feeling helpless on any regular day, but this was far from regular. I do not want to sit around while people are struggling, but I have to.

I hope I never have to go through this again and I certainly hope that none of my readers have to experience something like this. In case you do though, keep some of these things in mind. Learn from my mistakes!

This post originally appeared on Chronic Mom.

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Thinkstock photo via Citysqwirl.


Oh! It’s so hard to stay upbeat. It’s so hard being positive when your chronic illness really sucks! Day in and day out, some good days, some days not good at all.

Occasionally, I lose the plot. Then I get down and frustrated. It think it happens to everyone who lives with chronic illness. After my most recent visit to the hospital for an overnight stay, I thought I might just try to find some humor wherever I can!

 

Now hospital visits usually happen without any planning. We are living in a tiny home so I don’t have lots of storage space. So I don’t have a pre-packed hospital bag in readiness. But I am now going to prepare a list to make it a bit easier for my husband. My brain is usually in “high brain fog” state when I get admitted, so my communication skills sometimes go a bit awry.

My husband empties out my swimming bag and puts in what I need for the hospital. This last time, I found some interesting things still in my bag when I was packing up to come home: my goggles, my swimming cap, my nose clamp thing… Luckily, my pull buoy wasn’t still tucked in the bottom of the bag. But, I did find my supply of almonds that live in my bag to eat after a long swim.

Here are some of the things I have discovered are essentials to include. They needed to be added to the usual toiletries, PJs, slippers, dressing gown, iPad, phone, book, charger etc. I also need:

1. My fluorescent swimming ear plug putty. Hospitals are so noisy and the snoring of roommates can rapidly destroy your equanimity.

When I was placed into a mixed ward I would have found these useful for blocking out the gas noises from my male roommates, and the sound of the urine bottles being filled up in the middle of the night.

2. Flip-flops. The last two hospital stays have been interesting in the shared bathrooms. I want my waterproof flip-flops for protection.

3. Fruit, mandarins, some tiny tomatoes and some nuts. There’s often not food I can eat. So I am now going to take a packed lunch with an ice pack.

5. A pick-up extender arm. I can never reach the cabinet or all the things I need from my bed. I am not always in a “get-out-of-bed-able” state.

6. A sleep mask! Curtains don’t always close, lights in hallways are always on… The less I see at night, the better! I am going to make a new pair with a set of big cat eyes on the outer surface in glow-in-the-dark fabric!

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Thinkstock photo via DAJ.


Author Toni Bernhard shares six common things people believe about having a chronic illness that aren’t true.

Read the full version of 6 Common Misconceptions About People With Chronic Illnesses.

Read the full transcript:

6 Common Misconceptions About People With Chronic Illnesses

Misconception #1: The way a person looks reflects how he or she is feeling physically.

The truth is… there I am, “looking great,” while my body is pulsating with flu-like symptoms.

Misconception #2: If people’s mental state makes them feel worse physically, than their chronic illness cannot possibly be physically based.

The next time you feel under stress — can you feel that your muscles have tightened?

A person’s mental state can easily exacerbate the physical symptoms of chronic illness.

Misconception #3: “Radical rest” will assure that the chronically ill will feel better than if they didn’t rest.

Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

Misconception #4: If chronically ill people are enjoying themselves, they must feel OK.

People who are chronically ill have learned to put up with the symptoms of illness.

Misconception #5: Stress reduction techniques are a cure for chronic pain and illness.

Stress reduction techniques can be effective symptom relief, but they are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

Is being home all day feeling sick and in pain a dream lifestyle? I think not.

I hope that, someday soon, we can say these are six uncommon misconceptions.

Written By Toni Bernhard


Back-to-school time may bring a sigh of relief to many parents, but for those living with chronic illness, it can bring a host of challenges. At times, schools, teachers and other parents are unaware parents are even struggling and, when they do know, often have no idea how to help. I want to change that. Using both my own struggles and speaking with other parents living with chronic illness, I’ve created a list of things that can help. Print it out and make sure your school has a copy – or 10.

1. Making School Events Available

One of the hardest things for parents is missing out on seeing their children in action, from plays to concerts to classroom visits. “My daughter had a play and I had to miss it,” one parent shared. “It broke my heart to not see her.”

 

a) Videotape buddy. “Schools could easily match parents up with a “videotape” buddy, either a parent in the same class or a school volunteer who could tape events or Skype parents in. The value in being able to see your child in action without having to go through the logistics and pressure of asking every time can’t be overstated.

b) Physical accommodations at events. For others, physical accommodations are the difference between being able to attend an event or not. Personally, while I’m usually able to make it school, I’m unable to stand through even a short event. Knowing there’s a guaranteed place to sit reduces emotional and physical tolls on my body. Some other accommodations include access to: parking spots, private bathrooms or a quiet space.

2. Alternatives to Parent/Teacher Conferences and Other Meetings

Similarly, conferences can be challenging on several fronts. The traditional format doesn’t always work.

a) Offering video conferences. Providing an option to have the conference via video is a game changer. As a former teacher myself, I hold the parent-teacher conference as sacred, but this year, on the day of my daughter’s, I was struggling to get out of bed and knew I’d never make it to school. When her teachers agreed to FaceTime instead I almost cried from relief, knowing I could participate without setting myself back.

b) Providing written notes for key points. For many parents, attending a conference is one thing, but due to brain fog, a cognitive impairment often present in chronic illness, retaining the information is another. “I’d love to have a write-up of main points, or follow-ups,” one mom said, “because I’m there, I’m trying to process, but often half of it’s gone.”

c) Offering video for other meetings. This same idea applies to other meetings, such as PTA or other committees. “I never can join parent meetings or social events,” one parent said. “I wish the meeting would be on Skype or they would at least write what happened.”

3. Drop-Off and Pick-Up

Almost every parent I spoke with mentioned the challenges of drop-off and pick-ups. One parent explained, “Sometimes we have to stand for 15 minutes while waiting. I can do it, but then that’s pretty much all I can do for the day,” adding that because she didn’t “look ill” no one understood.

a) Make parking available for parents either by opening up disability spots or the faculty lot, or reserving a temporary space.

b) Provide a designated adult to walk kids to the gate, car, etc. While schools usually let parents designate someone to do this, many parents don’t have someone they feel comfortable imposing on, on a day-to-day basis, so facilitating this would be remarkable.

4. Don’t Penalize Children for Fallout From Parents’ Illness

Many parents mentioned concerns that their children come under scrutiny for things ranging from having incomplete uniforms or “sub-par” lunches. “I just want the school to know, it’s not my child’s fault and I’m doing the best I can,” one mom said.

a) Make allowances for lateness. While no parent has an easy time getting out of the house in the morning, for parents with chronic illness it can be more challenging than launching a shuttle into space. From fibro fingers, struggling with buttons and bouts of vertigo to simply not being able to move as fast, the obstacles are endless. One single mom shared how upsetting it was that her son had marks against his attendance for lateness, suggesting, “There should be a commodity for parents with disabilities.”

5. Consider a School Liaison for Parents With Disabilities

If the above at first seems daunting to a school, realize that once a system’s in place, it can become quite simple. One parent shared that her school had a designated liaison for parents with disabilities and it made an amazing difference. That person was the designated contact between the parent and teachers and administration, facilitating much of the above and anything else that arose.

Implementing the simple steps above can create positive effects for a parent and child that will ripple through a lifetime. There is no price you can put on that.

This post originally appeared on Lupus Chick.

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Thinkstock photo via Dynamic Graphics.

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