Black And White Portrait of a sad Teenager Girl with long blonde Hair. She is sitting on a Window in the Rainy Autumn Day with text 22 things people with chronci illness don't admit to their healthy friends

22 Things People With Chronic Illness Don't Admit to Their Healthy Friends

It’s not always easy to talk about your illness with healthy friends. Will friends who don’t know what chronic pain and fatigue feel like understand when you tell them about your latest flare? Will they offer “cures” and advice they’re sure would help, but won’t? Or will they listen with the caring ear you hoped for? When you have an illness that doesn’t “go away,” people don’t always understand, and there’s so much that often goes unsaid.

It’s time for healthy individuals to recognize what’s really going on with their friends living with chronic illnesses and understand how their support (or lack of it) affects their friends. So, we asked our Mighty community to share what they don’t admit to their healthy friends. If you’re reading this because you know someone with a chronic illness, remember this: Even if your chronically ill friend is smiling and “doesn’t look sick,” they may still be dealing with difficult symptoms and feelings. Don’t forget to reach out and show them you still care.

Here’s what the community told us:

1. “Please don’t stop inviting me places, even if you know I can’t go. The social isolation hurts more than the pain most of the time.”

2. “I wish people visited more. I wish people would just ask me how I’m feeling every once in awhile. It wouldn’t kill them and would make my days brighter… it would make me feel like I matter when I often feel I don’t.”

3. “I always get frustrated when someone complains on and on about a headache or virus and then I get mad at myself for not being more understanding.”

4. “I’d love for them to learn even just the basics about my illness because it gets frustrating and depressing having to explain so often. It’s not a problem with everyone, and maybe it seems like a bigger deal than it is, but it would only take five minutes to get the basics and would show someone actually cares.”

5. “I regularly feel like a burden, and I desperately want to talk about it but am so fearful of sounding like a broken record. Chronic illness isn’t something I can just push to the back of my mind. It is always present and is painful in more ways than one.”

6. “Sometimes, I’m jealous of you because you don’t have to live with constant pain and severe fatigue. Sometimes I’m jealous because walking is so hard for me and easy for you. Sometimes I’m jealous because you can do activities with your kids and my health keeps me from doing those things with my kids.”

7. “While my disease is not life-threatening, it is life-encompassing. People rally around those with certain illnesses with endless support and encouragement, and often I wish I had just a bit of that. We are the forgotten because we have to keep pushing through day by day until it’s our normal.”

8. “My house is messy because I’m too sick to clean most of the time. That’s why I tend to be a hermit. I wouldn’t want someone to come over when my house looks a mess.”

9. “I try to go to work with a fake smile on my face because it’s easier than breaking down and crying because my body hurts so bad. And when I do call in sick, I feel so horrible to the point I should be going to the ER, yet I don’t. The next day I’m back at work with the same disgusting smile on my face to hide my pain, and everyone thinks I’m faking my illnesses because of the fake smile.”

10. “It has made me more empathetic and understanding because before this I never understood limits. It has made me stronger because I draw on inner resources I never knew I had. It has made me more interested in living every good day to its fullest because you have to fit more into a good day if you know bad days might be ahead. It has made me feel blessed because I have friends who care enough to be there. And it has made me love more because I want to give it all while I have the opportunity.”

11. “I usually feel terrible after, or even while, spending time together. I’m usually so wrecked from using all of my emotional energy that I’m down for at least a day or two after. I never tell my friends that because I don’t want them to get the wrong idea or feel guilty. A couple days of being down is worth it to spend time with them in my opinion.”

12. “I feel guilty I’m not more involved with their lives, that the days can blur together so much that I don’t realize how long it’s been since I talked to them. Luckily, I have very understanding people in my life, but I know not everyone has that.”

13. “I know they have good intentions when they try to relate by saying things like, ‘I’ve had a cold (or some other common, acute illness) so I know how you feel now,’ but it comes off as patronizing and offensive.”

14. “I don’t tell my friends how upsetting and embarrassing it can be constantly requesting that they slow down when walking because I can’t keep up at their pace and fall meters behind them. Or internally struggling because I am forced to keep up as best I can.”

15. “I have so many other problems on top of my autoimmune disease. I constantly worry I will develop a new symptom or a new illness that will take away more of my time and energy.”

16. “While they know my illnesses are bad, I don’t often show just how bad they can get. I don’t think they realize what an effort it is just to get out of bed is. Even if I go downstairs and rest on the sofa, that can still make me exhausted. When I’m able to hang out, that’s me on my absolutely best days.”

17. “I’m still me inside. I’m still fun. I’m still outgoing. It’s just hidden and marred by this invisible illness. Sometimes I go home and cry because I feel like I’m covered in a layer of pain. When I’m with them I smile and act normal because I secretly wish I was. I hope and pray one day it will go away. But secretly I don’t think it ever will. I appreciate all they do for me. And I hope they never leave.”

18. “There is no ‘look’ when it comes to having a chronic illness so stop before you assume. Talk to me as a person. My illnesses is part of who I am but not all of it. Get to know me, not my illness.”

19. “I wish they would still tell me about the problems/excitement in their lives. I don’t instigate conversations because I don’t have much to talk about, but I would love to hear about them!”

20. “Honestly, with my close friends, I don’t hide anything. It’s easier when you tell it all. Keep them aware. They want to know more. They want to help.”

21. “I spend so much time sitting on the couch watching Netflix (I can start and finish a whole show in two days). I go many days without a shower or changing my clothes or sometimes even brushing my teeth.”

22. “When I’m having a bad day, their voices hurt and their touch hurts. Yes, even whispers and kind hugs can make a TMJD migraine worse. I still love my friends, even when they make me flinch.”

22 Things People With Chronic Illness Don't Admit to Their Healthy Friends


The Story Behind the Viral 'Angry Splash Mountain Lady' Is Surprisingly Relatable

If you saw this photo of Jordan Alexander last year, her arms crossed angrily as she rode Splash Mountain by herself, you aren’t alone. In March 2016, Jordan Alexander became a viral sensation after her husband, Steven Alexander, wouldn’t go on the ride with her. Now, a year later, Steven Alexander is sharing the backstory behind the “Angry Splash Mountain Lady” meme, and it’s a story people with chronic illnesses and those who love them can relate to.

When Steven and Jordan Alexander first met, Steven was about to return to kidney dialysis following his first, and failing, kidney transplant. “Starting a new relationship under these circumstances was hard, but she stuck by me – and a few years later we were married,” Alexander told Love What Matters. The two planned to make it to Disney World, but for years Alexander was too sick to travel. Finally, after a second kidney transplant, the Alexanders made it to Disney, only to find Jordan’s favorite ride, Splash Mountain, was closed. 

The Alexanders returned to Disney World after the birth of their son. “We spent a nice day in the Magic Kingdom, but towards the end of the day – I ran out of steam, and told her she’d be better off riding alone,” Alexander explained. After Alexander told his wife he wasn’t going to be able to ride with her, she marched off alone, returning with a photograph of herself sitting angrily on the ride. It was a moment of humor, that would go on to internet fame.

“We both broke into laughter, hugged and made our way out of the park.,” Alexander wrote, describing the first time he saw his wife’s iconic photo. “The ability to make each other laugh, even in the difficult times, has been the glue of our relationship – I don’t think I would have survived without her in my life.”

Fortunately, Steven and Jordan Alexander got another chance to ride Splash Mountain after Visit Orlando, Orlando’s tourism board, flew them out to Disney.

You can read Steven Alexander’s full post on Love What Matters below. 

Young woman who fell asleep on a sofa while reading books that are scattered around her

7 Tips and Tricks for Getting Through College With a Chronic Illnesses

As I lay in my bed on a cozy Sunday evening, despite the relaxed energy surrounding my loft apartment, my mind couldn’t help but wander to the upcoming week and my list of things to do. That’s pretty reasonable though, right? I mean, who doesn’t think about all their responsibilities and obligations as a new week approaches? Tonight I am preparing for my first week of spring semester graduate school. My mind feels totally scattered as I am thinking about what I will need, when my syllabus will be posted online, what kind of notebooks or binders I should use, and heck, what classes am I even taking? I hope I am prepared and show up to the right room!

Take a second and breathe.

“You’ve got this,” is what I keep telling myself.

I wracked my brain thinking of all I need to do for class tomorrow so that I am able to be physically OK for class. If you have a chronic illness, you know it’s just not as simple as showing up to class. There are several steps that one must take to be able to be successful in school.

Whether you are in high school, college undergrad, grad school, or getting your doctorate – if you have a chronic illness, you need to make sure you are taking good care of you and doing everything in your power to help yourself physically, mentally, and academically. By doing this, I guarantee it will be much easier to thrive and prosper in school.

I decided that I would share some of my major tips that helped me get through my first semester of grad school, and doing so while receiving good grades. My tips are geared towards students who are attending college, but some of these can be applied to high school, too!

Tips to getting through college with a chronic illness:

1. Talk to your professors. I cannot stress this enough. It is so important to have open communication with your professors about your disability. Now, I do not mean that you have to go into details and reveal what your disability is, but you do need to let them know that you have an illness/disability that may result in missing class some days, not always being able to meet original class deadlines, etc. Most professors I have found to be very understanding and willing to make accommodations for you…which brings me to my next point!

2. Utilize available resources for students with disabilities. This has literally been a life saver for me. Without accessibility resources at my university, I would probably not have been able to return to school when I did. Often times, schools will have programs for students with chronic illness or disabilities where students can receive a list of accommodations for whatever they are struggling with. This list is given to the professors and can help the professor better understand exactly what they need to do in order to assist the student in need. Some examples of accommodations could be taking tests in a certain room or the ability to have extensions on assignments.

3. Get a disabled parking pass. This is necessary at my school. I go to a large university that has a widespread campus, and consequently, very little parking available. I would not be able to sit through class if I had to park on the opposite side of campus, then walk all that way to my building. As someone who cannot stand for long periods of time, it is only fitting to have a disabled parking pass to help me get safely and securely to my lecture. So, if you are that person with low blood volume or a racing heart and dizziness upon standing, a parking pass could really work in your favor.

4. Wear compression stockings and always carry a water bottle. This has definitely helped me on longer days. Again, if you have low blood volume or blood pressure, compression stockings help keep the blood from pooling at your feet and in turn, help keep you more awake and alert in class. A water bottle is also key for long lectures!

5. Take a couple of online courses! Before I was able to actually attend a lecture in person, I took some online courses to ease myself into it and to work my brain, even though my body couldn’t physically handle going in to school. If you are in that position, I suggest trying a couple of online courses. They were great for me at the time and helped me to feel like I was still busy while being practically housebound.

6. Go part-time if you need to. I do not go to school full-time because I know that would be way too difficult for me right now. My health would suffer, mentally and physically. So I am taking it slow and going to school part-time. At first I was kind of embarrassed to only go part-time and not have a full-time job, but then I realized there is no need to be ashamed! Everyone is doing their own thing and we all have to ultimately do what is best for us. Don’t worry about what other people think! It’s definitely not worth our time and energy.

7. Give yourself a darn break. It’s fantastic that you are even going to school while sick and suffering with one or more chronic illness. Going to school is a huge accomplishment, and you should be proud of yourself for trying and making it to where you are. If you have to use an accommodation, use it. If you really don’t feel up to going to class, don’t go and email your professor. Don’t wear yourself too thin, because your health could be on the line. And that is first and for most your number one priority.

And that concludes my tips and tricks for going to college while being sick. I hope these help you and make you feel a bit more confident in tackling the semester.

Happy studying!

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Thinkstock Image By: KatarzynaBialasiewicz

Two people sitting on bench in black and white

What My Friends Need to Understand When I Talk to Them About My Illness

I’m up until 5 a.m. every night and I don’t know why. My heart is racing to the point of exhaustion, but yet not enough of exhaustion to sleep. I’ve had anxiety but this feels different. Ever since my medicine changed it’s just a whole shift in my personality. I calmed my anxiety… it wasn’t perfect, but I was coping. But this medication has reverted me back to my old ways. I don’t know if it’s side effects of nervousness or palpitations… and not knowing what it is is the worst part.

The cycle never ends. It’s a never ending issue of feeling fine one day and being severely ill the next. When I get well I don’t get happy anymore because I know a down is yet to come. And it’s not because I want it to, it’s that my body keeps failing me over and over again. I can’t sleep from the ear ringing and headaches that make you feel like your head has been bashed into the root of your skull. The feeling of my heart pounding out of my chest. The numbness protruding down different regions of my body uncontrollably at random occurrences. The muscle spams, the twitches, the inability to draw a straight line. The world turning black for what feels like decades every time you try to stand on your own two feet. The ray of heat making and burning red marks and the pooling of blood from your knees to your ankles. You hope no one notices, and the agony just feels like you’re going to die. That’s not even the worst part of it all. The worst part is with or without a doctor, something will always be there, no matter what I do.

That’s chronic illness, it can consume you, eat you up and sometimes even take over all you are. I’m sorry I talk about my illness to the point of people assuming I’m negative and I’m sorry I have a giant prescription case every time I go somewhere. To all the friends of a chronically ill person, please understand, chronic illness is so debilitating… we get so used to it that for many of us, it’s basically what we breath each and every day. The simple conversation about work or how you saw that guy and it was awful — that’s how simple chronic illness is to me. Simple yet intricate. Your boy troubles, your family issues, your work misery — that is what my chronic illnesses are to me. And I’m not trying to be negative or a downer, I’m simply trying to express my life to someone else just like you are with the problems you face.

Please don’t turn me away because of my illness because is so “taboo” and “uncomfortable.” Please sit and listen like you would to any other issue.

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Thinkstock photo by badmanproduction

Plastic bucket with cleaning supplies in home

When an Illness Makes Cleaning the House a Thing of the Past

I’ve never been a fan of house cleaning, but at least I was adept at it.

I could clean, scrub, mop, Hoover and dust two bedrooms, a large living room, a sizable kitchen and the bathroom in an hour and still have breath to wash my neighbors cars, do the window cleaner’s round, shop for the old lady across the road and mow the whole neighborhood’s lawns… OK, that may be a little bit of an exaggeration.

I was, I admit, a little particular when it came to hygiene and would whizz around the house like a speed loaded Superwoman. Of course, being a virtuoso of germ busting, I could catch a speck of dust before it had time to land on a newly polished surface and if there was a water mark on the table, I would throw a rage so scary and of such apocalyptic proportions that even Satan himself would be so terrified as to renounce the heathen life and turn to God. And maybe, just maybe, I did get a little carried away, especially when I used to wake my child up at 3 in the morning so that I could change his bed sheet and duvet cover. But fear not, for this was done with such skill and precision that come the morning, he would have no recollection of being hoisted out of his bed and thrown upon a chair. Instead, he would awaken surrounded by the scent of lavender blossoms and pine needle forests, instead of dead man’s feet and Gorgonzola.

Back then, my little man was a great co-conspirator in my need to purge the dirt and when it came to “tidy up time,” like Snow White and her men of short stature, we would whistle while we worked. Nowadays, I have to make an offering to the Norse Gods in the hope that they will grant him the ability to pick his underpants of the floor, least they walk to the washing machine themselves. Today, my need for a clean house is still there, but my ability remains hopelessly lost.

Thirty minutes ago, I hobbled downstairs to get the clothes from the washing machine. That was it. The result from such a simple activity left me out of breath, in pain and perspiring.

Housework consists of wiping a surface, then resting. Washing up, then resting. Plugging in the Hoover, then resting. Hoovering then…well, you get the picture. I can no longer speed around the house. I can maybe clean one room and that’s it for the day because the resulting activity will bring on a flare and have me bed bound for a week and that is no exaggeration.

Last week I went food shopping, came home, dumped the bags in the hallway and literally crawled up the stairs to my bedroom. I was only suppose to rest for five minutes but passed out for four hours. And that’s where I stayed, in bed and weeping piteously.

A triumphant day for me means changing a duvet cover (although once I’m finished, I have to crawl right into bed afterwards) or cooking a meal. I can’t attempt to even begin to clean the boy-pit that is my son’s bedroom. That requires at least two days, a JCB digger and Herculean strength.

I remember the time I attended a pain management group and how the therapist asked what would happen of we didn’t tidy the house. What was the worst that could happen? You could actually see the look of fear in her eyes as the group, which was comprised solely of women, snarled at her like rabid Rottweilers. Because it isn’t just about cleaning, it’s about loss. Not being able to tidy is a daily reminder of yet one more thing that’s been taken away. It’s about not being able to do even the most menial of tasks, which in turn, can make us feel inadequate about ourselves.

It’s about feeling “useless” and like I no longer having a defining role in my own household. It’s about feeling like a failure to be the glue that hold the pieces together. But more than that, it’s about the fact that my many illnesses feel like they’ve beaten me yet again.

I never thought that there would come a day when I would miss doing housework or think about how much we take being able to do such a simple task for granted. But I can honestly say, that I do. I really do.

This blog was originally published on More Sleep Please.

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young girl holding a bucket and standing in shallow water

The Importance of Dreaming as a Chronically Ill Adult

What were your dreams as a kid? I wanted to be a “professional cash register person” (direct quote from childhood me). A teacher, like my mom. Pile on plastic jewelry with abandon. Join the Boy Scouts (canoes > crafts). Write a book. Acquire a lifetime supply of Fun Dip. Set a Guinness World Record for most butterfly clips in one ponytail. Perform.

My current dreams? Give myself room, time and permission to heal. Read a book that transforms me. Write a book that transforms you. Return to Spain. Eat my way through Americana’s diner scene. File my taxes. Write a letter every week. Do yoga every (other) damn day.

When you’re young, dreams are everything. The world says “Great Job!” and might even put it up on the fridge underneath a blueberry-scented magnet. We’re allowed to think in big, unrealistic, imaginative thought bubbles. Polly Pocket can marry Pikachu and it’s the best thing ever. But as adults, dreams dwindle under obligation. Aspirations collapse from unsolicited opinions. And for the chronically ill, the idea of dreaming (or even mustering enough energy to think about tomorrow) is obsolete.

young girl holding a bucket and standing in shallow water
Me, back when things were a little bit simpler.

While I’m guilty of being my own worst enemy, I think it’s important to think big – whatever that means for you. Be the change. Don’t settle. Try again and again until you fail. And then try again because let’s face it: life is hard and it’s bound to happen. Have more meaningful conversations. Spend entire days (or weekends?) in your underwear. Learn a new language because your brain wants the challenge. Donate your time to a stranger. Wear mismatched socks and an armful of bracelets. Cut the crusts off your sandwich. Eat your pizza backwards. Move to a place where you don’t know a soul. Give blood. Adopt something. Start a comic book club. Meditate. Sign a petition. Call your grandma.

So very often, I find myself thinking that being sick and having dreams are mutually exclusive realities. Do you, too? Sometimes it almost seems like cheating if I can’t live a “normal” existence and yet I find myself drifting off to the abstract corners of my psyche. But aren’t the point of dreams to inspire oneself to be better, do better, act better? So perhaps having a dream is the only way to get through each day and onto the next. A way to connect, pick ourselves up and magnify whatever joy we can find.

I’ll try to give myself a break tomorrow and dare to dream a little more and worry a little less. Perhaps I will see you there.

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