What Sleeping Is Like When You Have a Chronic Health Condition

What sleeping is like for people with chronic conditions and what healthy people don’t understand about them.

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What Sleeping Is Like When You Have a Chronic Health Condition

For people battling chronic disease, sleep is a complicated thing.

Our relationship with sleep is one where we regularly swap between not getting enough and getting what many people call “too much.”

I typically have to be in bed for around nine or 10 hours to wake up functional.

If I take my medication to get to sleep, I might be in bed for 12.

And that’s on a good day.

On a bad day, I am in too much pain to sleep even with my medication.

Other times, I can’t stay awake.

It’s frustrating to never know whether or not I’ll be functional until I open my eyes.

It never gets easier, either, because we’re either too sleep-deprived to be human or we’re out like a dead thing because our bodies have finally let us rest.

I can’t tell you how many times I’ve heard well-intentioned friends postulate that I feel so crappy all the time because I sleep too much.

I appreciate their thoughts and intentions. Really, I do. However, they couldn’t be further from the truth.

Your body usually knows what it needs.

You keep doing whatever it is you need to do and take care of yourself with the guide and care of your physicians.

Take care of whatever you need to, and don’t apologize for it.

You are who you are, and that’s OK.

Written By E. Prybylski


mandy harvey on america's got talent

Watch as This Singer Who’s Deaf Due to Chronic Illness Slays on ‘America’s Got Talent'

Mandy Harvey, a 29-year-old singer from Orlando, has been deaf for 10 years, but last night, she blew the “America’s Got Talent” judges away with a performance of her original song.

Harvey told judge Simon Cowell she’s been singing since she was 4 years old. When she lost her hearing at age 18, due to a connective tissue disorder that caused neurological damage, she stopped singing. Then, she learned how to use muscle memory and visual tuners, perform without shoes so she can feel the vibrations in the floor, and trust her pitch, all of which allow her to sing even without her hearing.

Watch Harvey’s performance of her song “Try,” which earned her Cowell’s “Golden Buzzer,” an invitation to go directly to the live round of the competition. Describing the meaning of the song, Harvey said, “After I lost my hearing I gave up, but I want to do more with my life than just give up.”

In an interview with the BBC earlier this year, Harvey said her dad, a fellow musician, suggested she start singing again to help deal with the emotions she was experiencing after her illness took a quick turn and she lost her hearing.

“I stopped leaving my room, I had trouble getting out of bed, it was a struggle to breathe. I didn’t eat, I didn’t shower, it all fell apart in a very quick motion,” Harvey said. “I have a connective tissue disorder. I have very fragile nerves and they deteriorated and that was caused by several different factors including a bunch of surgeries, a bunch of medications, the stress and hormones of being 18… I deal with my joints and nerves on a daily basis. I dislocate from head to toe. All the time I wake up and my fingers are dislocated. It is what it is, that’s the worst but the best way of saying it.”

She expected singing to help her accept the end of that part of her life; instead, she and her voice teacher realized she could still sing on pitch, and she began performing professionally.

“[Singing again] was supposed to be the closing of a chapter,” Harvey said, “but it opened up a bigger one.”

girl texting on her phone

Why I'm So Open About My Health on Social Media

I often see people struggle with sharing their health online. Not wanting to overshare. Needing to share. Needing the support from their friends when their body and parts of their life feel like they are out of control. Sharing too little. Sharing too much. Having “friends” or family tell them they are whining too much, or just want attention.

If someone is sharing their personal pain online with their friends, the last thing they need is for the people they’ve shared with to add more pain.

They need support. A hug. A listening ear. Someone who says, “I hear you! I see your pain. I love you and I want you to know that!”

Often, though, that’s not what people get. So, they become afraid to share. Social media becomes this cotton candy fantasy land of perfect lives.

But not my social media. I’m extremely open. Some would probably say too open. I’m not sure about that, though, because if they think that, they are being respectful of me and keeping that to themselves. I share almost everything. The good, bad, silly, funny, sad, awful and the fanciful. And I receive overwhelming support from my friends.


So, I wanted to find out why. Why I’m lucky enough to be able to be “TMI,” without being pulverized emotionally. I asked my friends if they’d be willing to comment how they feel about how extremely open I am and what that makes them feel about me. Positive or negative. What their impressions are of my sharing.

These are the things they said:

“You are positive, supportive, compassionate. Even when life keeps throwing you curveballs you keep trucking along. You are honest and share your moments of frustration but don’t wallow in it.”

“Open. Human. Real. Honest. Perfectly imperfect. I appreciate how open you are about things. Sometimes I hesitate to be open about stuff because of how some family may react, but seeing how open you are has helped me be more open. The two most negative people towards my posts are a family member and a friend. So I tend to screen from that friend and family. Sometimes it means changing who can see it and sometimes it means not posting at all. But you have helped me see that this can be more of a forum as I have always felt it could be: to help people.”

Another comment spoke about how they don’t get the support from certain people. That it is difficult for some to come to terms with people who will never “get better.” So they are unable and unwilling to share with these people. That they post all things, positive and negative, showing reality, but after a decade of illness some in their life can’t handle it.

This all leads me to feel that I’m glad I’m so open, I’m lucky my friends support me, but, more importantly, the people who aren’t supporting you, who say nasty, judgmental things after you share your pain or reach out for support, are actually the ones with a problem. They are unable to cope with seeing a friend who will never get better. It doesn’t make them a bad person – it is hard! But it also doesn’t make it wrong for you to share your health struggles. If they can’t handle that pain, the hurt you actually go through, of course they will then judge you. When we are uncomfortable, we often lash out at what is making us uncomfortable. But don’t let that make you judge yourself. You are not too needy, attention-seeking or too depressing. You are real and some people will appreciate that for the gift it is.

The other thing I’ve decided is that it’s important to try to keep a balance. When really ill, it can be difficult to see the beauty around you, but it is there, even if it’s just a gorgeous sunset. If you want to share who you are with your friends online, share all facets of you. Share your trials, your joys, your embarrassments and your loves. You are not only a sick person, so share all of who you are with your friends.

And if any of them don’t like it, or are rude to you, use that nifty little option to block certain people from seeing certain posts. When you need support, love and understanding, you deserve to get those. Any who make you feel bad for being a human with feelings and the need for kindness are not the kind of people you can rely on for the support you are looking for. Self-care. You deserve caring, sensitivity and true friendship.

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Thinkstock photo via milicad.

Doctor and stethoscope.

When an Urgent Care Physician Assistant Belittled Me About My Disability

I recently had to make the terrible, no good, very bad decision to go to my local Urgent Care due to a health crisis. It was frankly one of the most disturbing experiences in my life, exacerbated by the fact that the person who was supposed to be helping me showed terrible prejudice against disabled people.

Let me preface this by stating I am disabled, and my disability is somewhat invisible. I use forearm crutches or cane to walk usually, and was using a single forearm crutch at the time, but otherwise I appear neurotypical and able-bodied. However, I am neither. And even if I were, the events of my visit would not have been appropriate.

Before my urgent care visit, my neurologist made the decision for me to stop taking a medication “cold-turkey” — to just stop taking it without tapering off slowly as one normally does. This was because the medication was making me violently and potentially dangerously ill. A replacement medication was chosen, but my insurance had not yet covered it over a week later, causing my medical crisis. I sent my doctor messages, tried calling the office and found it closed, and with escalating symptoms, I decided I needed to go to urgent care for help.

Unfortunately, I never found help. I know this is an all too familiar feeling for many disabled individuals. I saw a physician’s assistant who took a short history, did a cursory exam, and briefly asked about the events leading up the visit. He failed to inquire at all about my physical symptoms. At this point his blatant ableism became apparent, starting with never identifying or even acknowledging I was having a medical problem.

During his dismissal of me, the PA said, “You’re not really that bad, you’ll be OK.” He also compared me to some other young woman in his life. I’m sure I bear no real resemblance to this individual, other than perhaps he thinks she can inspire me to overcome my disabilities. This was all said during an active anxiety attack, while I was doing deep breathing exercises in front of him to control myself.

The PA decided to follow that dismissal with a lecture and told me, “You’re 28; you’re young. Get out and travel. Go to college. When you’re old, you’ll wish you’d done more at your age.” I found this incredibly appalling. I also happen to be highly educated; however, that isn’t in any way relevant. What is relevant is that I am disabled, and the PA failed to understand this. When I informed him of this, he first asked me what I studied, but then quickly said I should look for a job online, regardless of my “cognitive problems.” He also said I “just need to get out.”

I am still completely shocked by this “advice.” I don’t understand how the PA could think this was at all appropriate to say to someone who was having a medical emergency, or to a disabled person. Being told to essentially “walk off” my disability was a pretty harrowing experience I hope to never repeat. I already had a lot of trauma surrounding mistreatment by medical professionals, but the disdain and utter disregard I experienced at the hands of the physician’s assistant at the urgent care was an ordeal on another level.

Before leaving the clinic, the PA offered me Tylenol, which I can’t take, and since I wasn’t presenting with pain or fever, I’m not sure how it would have helped.  That was the entirety of his diagnosis and treatment plan; an over the counter fever reducer/pain reliever and a sickening ableist lecture.

I’m not sure if I was more disturbed by the total lack of care or the complete prejudice against disabled individuals he displayed. I hope no one else is ever treated the way I was, but I think that’s unlikely. I do hope that by sharing what happened to me, I can help prevent it from happening again.

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man and woman laughing together in a bar

Why You Shouldn't Be Afraid to Date While Chronically Ill

I was young and single, with a chronic illness that had left me unable to work. I feared no man would want the trouble of a relationship with a sick person, with someone who couldn’t contribute financially or in certain other ways.

I felt defective. Unlovable. Undeserving. I was terrified at the thought of dating and having to explain my illness.

All these questions would run through my mind.

Do I tell him on the first date or wait? Do I make it sound less severe than it is? How will my emotions handle it when a man I like decides my illness is too much for him?

It’s one thing when you enter a relationship as a healthy, financially stable person. It’s an entirely different thing when you enter it broke and sick.


I didn’t date at all for seven years after my health issues contributed to a break-up. My health wasn’t the only reason we failed as a couple, but it played a part. Some people aren’t cut out for life with a chronically ill partner. Especially when they are young and the possibility of being able to have children is rapidly dwindling due to the health issues.

I was really happy single, for a long time, but eventually I started to want a relationship again. I wanted someone to share the joys of life with. But I was so afraid to take the risk. Rejection is an awful feeling.

A friend I met at a chronic pain clinic changed my life. We became friends. I saw she was actively dating and meeting nice men, despite the fact that she was unable to work and going for pain treatments regularly.

I asked her one day if she’s found that men react poorly to her health. Her words changed my life.

She said, “No, not at all!” She then went on to say she has never had a hard time dating and the men have never minded that she can’t work due to her health. She said, what you do is you explain it like this…

“I have a chronic illness that causes severe pain and other issues. Instead of working, my full-time job involves going for treatments, seeing doctors and taking good care of my body.”

It sounded so simple. Too easy. I was doubtful. Hadn’t they ever bailed on her after finding out about her health? I asked if they’ve ever been upset when she’s been unable to do something or go somewhere.

She said, “All people want is to enjoy being with the person they’re with. To share a connection. To have fun together and be real. You have to give people more credit. There will be men who won’t mind at all. Who will love your personality and click with you. When that happens, your health doesn’t interfere with whether they want to date you. There will be men who can’t handle illness, but they will make it obvious right away and that means you weren’t right for each other anyway. Date! Have fun! Be honest but also be you, not just your illness.”

So, I did. I started dating. None of the men I dated had a problem with the fact that my health prevents me from working and causes me certain limitations. Some wound up not being the right guy for me, but that happens to everyone and it was never to do with my health.

Then, I met the man I’m with today. I told him about my health the first day we met, in the way my friend suggested to me, and it was a non-issue with him. I asked him later why it didn’t scare him. He told me I was so confident and upfront about it that he felt like I was confident in who I was and that I didn’t let my illness define me. That I was positive, but honest, and that really made a good impression. He had no reservations about dating me because I was comfortable with myself.

We’ve now been together for quite a few years. I don’t want to imagine how my life would be without him because he has enriched mine to a degree I never knew possible.

He has stood by me through things that could destroy a couple, yet it has only made our bond stronger.

I’m forever grateful I asked that fellow patient about dating. Without her words I may never have had the courage to date again. What a shame that would have been, because my fears of how a man would react never happened. Not even once.

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Thinkstock photo via nd3000.

purple butterfly and caterpillar

When Illness Makes You Feel Like a Caterpillar in a World of Butterflies

Today I read, “If nothing changed, there’d be no butterflies.”

And I want to know… What’s wrong with caterpillars?

Monarch caterpillars have always been my favorite. They are plump and colorful and they have little legs that tickle when they crawl on you. They can easily curl up into a ball. They eat milkweed, which makes them poisonous to birds – their stripes protect them from being eaten. They spend their days just crawling around the milkweed, and eating.

purple butterfly and caterpillar

Eventually, they spin themselves into a cocoon.

Living with a chronic illness means I feel like I have been a caterpillar for so long I might never come out of my cocoon. I can’t see the future and I don’t know what kind of butterfly I’m going to be. Sometimes I think I want to stay safe, wrapped up and protected in my cocoon forever.

I could hide away from the world, from pain, from hurt, from sadness. However, even in a chrysalis, caterpillars are not completely safe and snug, cocooned and protected. They are also vulnerable, unsafe and easily squish-able.

The thing about change is, it’s going to happen whether we want it to or not, and whether we like it or not. We are all both safe and vulnerable at the same time. Being vulnerable takes courage, and oddly, it is the thing that protects you because of how you feel after you open yourself up to change. As a wise friend once said to me, “I guess the best thing about butterflies is they don’t have to choose it. It comes naturally, amazingly enough.”

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