Lonesome girl holding a curtain. with text 22 challenges of being chronically ill that will make you say me too

21 Challenges of Being Chronically Ill That Will Make You Say 'Me, Too'

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The exhaustion of grocery shopping. The uncertainty of making plans. The comfort in meeting someone else with your diagnosis. If you’ve never experienced health challenges, these situations may not resonate with you — but those who live with a chronic illness may be able to think of an exact time they felt the same way.

There’s no one besides another chronically ill person who really “gets” what daily life is like when you have chronic health challenges, so we asked our Mighty community to share experiences that will have other members of the community saying, “Me, too.” The next time you encounter one of these challenges, remember that you’re not alone — there’s a whole community fighting these battles alongside you.

Here’s what the community told us:

1. “I’m not able to make plans, even if it’s a few hours away. I’ve had days of feeling great in the morning and being stuck in bed later that day. Each concert ticket is a risk, vacations are a risk, and you don’t want to make plans with friends because you feel bad when you can’t keep them.”

2. “I felt guilty because I was able to do something this morning, or yesterday, or last week, so surely I’m well enough to do it now, if I really wanted to. ‘Mind over matter’ comes with consequences. Pushing through the pain and fatigue only results in more pain and fatigue!”

3. “I’ll be exhausted even if I have done nothing but sleep or sit on the couch. I have to talk myself through taking a shower because it is so exhausting.”

4. “I’m in college and trying to find the balance between caring for my health and doing well in school is hard most of the time. It’s a constant struggle between being a ‘good student’ and not sending myself into a flare. Sometimes I feel like I can’t keep up with everyone else in my degree program; it’s like trying to run a marathon with weights strapped to your feet.”

5. “It takes so much strength and courage to leave the house. And when we do we put on a brave smile and pretend everything is OK.”

6. “I’m not able to enjoy intimate time with my significant other. I’m too exhausted, hurt, or I just physically aren’t able to.”

7. “Brain fog so bad that I can’t figure out how I got from point A to point B when driving somewhere because I have no recollection. Or brain fog causes me to do things like putting my makeup away… in the refrigerator.”

8. “I just slept until 1 in the afternoon and now we have to reschedule tuxedo shopping for my groom. Things like this happen so often. I can’t sleep or stay asleep and then end up sleeping during hours that businesses are run so I can’t get anything done.”

9. “Exhausting doctor visits have no end because… chronic! Closely related is the cringe quality of people saying, “You will feel better!”

10. “Finding a way of sitting comfortably and alleviating pain slightly, even if it’s for a few moments, is like all our Christmases have come at once. People assume we are ill because we ‘don’t get enough rest,’ yet finding comfort while sitting or standing is usually always painful.”

11. “I’m not able to just eat whatever I want. I constantly have to think about the consequences of eating something and whether or not I wanna deal with them, whereas my fiancé can just wolf down a cheeseburger or donut and not have to think twice about it.”

12. “There can be a sudden onset of symptoms. One day you can be just fine and feel like finally your life is normal, the next all you want to do is stay in bed all day and sleep.”

13. “When going to Costco is exciting because you haven’t left the house all week and you’ve been looking forward to it the way a ‘normal’ person feels excited about a concert or a trip to the beach.”

14. “When you have a new pain somewhere, like my index finger on each hand, or my hip all of a sudden hurting, or my neck throbbing and burning, and you are not sure if it’s related to fibro or osteoarthrtis, or something else is wrong. It can also be hard to tell which illness is flaring up sometimes or if it’s a combo of everything.”

15. “Doctors! We understand doctors, the good, the bad, and the ugly, like no one else… Sometimes it helps, sometimes we’re left way worse than when we started. Often we know more about our conditions, medications, and how they affect us than doctors will ever give us credit for. Then when you find those medical professionals who really hear you… that’s the best feeling.”

16. “The anxiety that comes with calling off work! I worked as a mental health therapist and sometimes worked up to 60 hours a week, so when I would need to call off work for my chronic illness I felt it was almost impossible to relax because of the intense anxiety I felt calling off.”

17. “I get excited finding someone else in real life who has the same illness as me so they ‘get it!’ You don’t have to go into detail talking about common situations.”

18. “The moment I realized I was no longer able to do things I used to do. Having to adjust to a ‘new normal’ which is anything but.”

19. “When arriving at the pharmacy, they greet me by name. Same goes for when I call the pharmacy, they recognize my voice and greet me as if I am family.”

20.Buying a whole new wardrobe because I now need clothes that are easier to put on and comfortable to wear. Planning what to wear in the morning takes much longer because I now have to consider my pain level and body stiffness. I have ulcerative colitis, so I also have to think about the potential for my belly to bloat.”

21. “Small accomplishments can be a huge thing on a bad pain day! E.g. getting dressed, having a shower, making something to eat, etc.”

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When 'Normal' Life With Your Chronic Disease Keeps Changing

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I’m not sure I exactly remember when it happened, but I know it was sudden. I was having trouble running, then walking. Soon, I couldn’t sit for more than a few minutes at a time without pain radiating up my back. I thought I had an injury – I lived an active lifestyle, after all. Surely I just pulled something or had a small stress fracture. It would get better.

But it didn’t.

Weeks turned into months turned into years. Along with the pain in my joints came rashes and overwhelming fatigue. I couldn’t form a fist anymore because my fingers were so stiff and swollen. I’d urinate blood every time I went to the bathroom. I started chemotherapy and it helped a bit, but even with such a potent medication I still didn’t feel the way I used to. After a few rounds of it, I realized that I probably never would.

Being diagnosed with a chronic disease wasn’t in my five year plan, to say the least. Neither was chemotherapy, or getting a port-a-cath placed, or seeing the doctor at least dozen times a month. I’ve had to adjust my diet around my faltering kidneys and schedule plans around the rashes on my face. “Normal” for me now includes frequent ER visits and struggling to breathe just walking to the mailbox. It’s pain in my joints, sometimes so severe I can’t get out of bed. It’s taking a handful of pills twice a day and taking a few days off a month to go to the hospital for infusions. It’s not what I planned, or what I wanted, but with time I found a strange comfort to my routine. As long as things stayed relatively predictable, my diagnosis and new way of life were surprisingly easy to accept and adjust to.

But chronic disease isn’t exactly predictable, is it?

A few months ago, I started coughing. I thought I had a bad cold, and because I’m immunosuppressed I knew it would take awhile to get over it. I monitored my temperature for any fevers, bought some cough drops, and tried my best to push through it.

Weeks went by and seasons changed, but the cough persisted. Soon, months had passed with no improvement. With the cough came shortness of breath, and before long I was coughing so violently that I was vomiting and spitting up blood. I couldn’t walk up the stairs anymore without having to stop and catch my breath, and started to realize that my physical ability was becoming increasingly limited. I tried all of the normal cough remedies, but none of them were helping. After a few visits to the pulmonologist, it was determined that my disease was attacking my lungs. The cough, the shortness of breath, and my limited physical ability weren’t going to improve. This was my new normal.

Years of treatments and therapies, all of the time lost in the hospital or laid up in bed after chemotherapy, all of the pain and all of the things I’d put on hold to treat my disease – it simply wasn’t enough. The disease is still there, and it’s going to continue taking and taking and taking until there’s nothing left.

Now, I’m reminded of that with every breath I take.

I’d be lying if I said I’ve always handled this well, or that I haven’t laid in bed at night bartering with my white blood cells to just, you know. Chill. There are days I’ve felt like I have to go explore the world to “make up for lost time,” and days when I wonder if it’s even worth it to get out of bed at all. Some days are better than others not just when it comes to the physical symptoms of my disease, but how I am mentally and emotionally coping with them.

The hardest pill I’ve had to swallow since being diagnosed with a chronic disease (and believe me, I’ve swallowed a bunch) was learning that with chronic disease, “normal” doesn’t exist. You’re constantly adjusting, whether you realize it or not, to your symptoms and limitations. Adjusting is difficult, and even after years of practice I haven’t found that it’s gotten too much easier. It’s going to take time, maybe a lot of it, and that’s OK. The point is to, despite how impossible it might seem, keep putting one foot in front of the other. Keep track of your little victories and never forget how incredible you are for just taking your medication, for eating breakfast, for walking down the stairs.

“Normal” is going to continue to change but as long as you keep going, you keep fighting, your disease doesn’t win – no matter what your blood tests or CT scans might say. As long as fighting is part of your normal routine, you’re a champion.

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When My Stepson's Writing Project Revealed How He Sees My Illness

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The concern and worry about how a child will interpret and understand a chronic illness of a parent figure can be troubling. Take it from me, a stepmom of an 8-year-old kiddo who knew me when I was well and knows me now that I am chronically ill.

There we were, sitting in the parent-teacher conference when the teacher said our child had written a family book. In the book he described his mom, his dad, his stepmom (me) and himself. Since becoming ill I have worried that he would look at me as not as “fun” as before or just someone who “holds us back.” He knows I am sick and he recognizes my illness and when I’m not feeling well. When he really wants me to do something he thinks ahead of time about how he can make it easier for me. In the past he has told me that he wants me to go on a hike with him on our property and that he has already gone up the hill and found the perfect rock where I can rest. He looks next to me now when I’m sitting on the couch to make sure I always have water. He especially steps up if his dad is out of the room.

Yet I still worry sometimes. I never want to embarrass him or be the stepmom “who uses oxygen.” To be honest I think when I use oxygen it worries him a little bit more than anything else. If he notices that I’m using oxygen he makes a point to come give me a hug and tell me he loves me.

I tensed when the teacher started reading from his book. He wrote, “Amy is the stepmom of the family. She is 31 years old. She likes to sleep. She is important because she loves us so much and she makes us food and she makes us donuts.” I was relieved because he also wrote that his mom (who is perfectly healthy) likes to sleep, too. It’s just some weird adult thing. I’m not a mutant. He doesn’t think of me as only being sick. He remembers the other fun things about me, too. He knows I bake and make yummy foods and snacks. Most of all, he knows I make donuts for him and I love him.

Maybe I have to rest a little bit more and drink more water, but he just thinks of it as an “Amy thing.” When I pass out in front of his friends he says, “Oh yeah, she just does that sometimes.” He knows that Aunt J doesn’t play Monopoly and that’s just an Aunt J thing. He doesn’t hold it against her. It’s just another thing to remember about her.

I’m not weird. I’m not an embarrassment. I’m the maker of donuts and everyone knows donuts are a love language.

Follow this journey on Smiles in the Trials.

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Thinkstock photo by dolgachov

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4 Gifts Chronic Illness Has Given Me

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It’s no secret that being sick really sucks. Losing friends, not being able to work and spending all your time at the doctor’s office sucks. But sometimes you have to go through hell to become who you are supposed to be.

Over the past year, I have discovered so many things I never could have learned in a classroom or on a job. Sometimes I feel as if I’ve already lived a whole lifetime and these other 20-somethings running around are just youngins who don’t know nothin’ yet. I’ve discovered that pain and struggling can teach you amazing things if you are willing to learn.

Here are four gifts I have received as a result of my chronic illness:

1. The Gift of Proactivity

Before I became really ill, my social anxiety was so bad that I was terrified of standing up for myself in almost every context. I was so afraid of “rocking the boat” that I became a passive wallflower who avoided confrontation like it was the plague. I wanted people to like me so badly that I was willing to stuff my own wants and needs under a mattress to rot.

But as I became sicker, I was forced to speak up for myself in all kinds of situations because my health depended on it. After a while, I didn’t mind being “that girl” who made a scene negotiating with the waitress about finding a dish that would meet my dietary restrictions. I no longer hesitated to ask friends and relatives if they could unplug their smelly Glade candles while I was over for dinner, because if they weren’t willing to make small adjustments for me then I couldn’t risk being there. (Shout-out to anyone who’s ever removed a Glade plug-in or Scentsy candle for me – you know who you are. Thank you!) It turns out most people are happy to make little adjustments to help a sick person out – who would have known? And now that I have a more courageous heart, I don’t mind asking for help one bit.

2. The Gift of a Clean Slate

When you experience a life-changing illness, everything you know is turned upside down. The pieces of your old life lie scattered across the floor and you have a blank playing board staring back at you…so what do you make of it?

Some people lose everything in a flash; a car accident leaves a professional athlete paralyzed and her whole identity is wiped away in an instant. Others, like me, lose little pieces of themselves over months, until one day we look into a mirror and realize we don’t recognize the face staring back at us. When you lose your independence, your hobbies and your job, who are you now, without any of the labels you took so long to earn? I had so many labels: “student,” “musician,” “rock climbing instructor,” “girlfriend” – and losing them was the best worst thing that ever happened to me.

Losing things sucks, but that loss also makes room for you to love new things. Once I couldn’t eat any of my old favorite foods, I learned to love a new set of foods (which was a huge deal for me, ’cause I’m a picky girl). For instance, now I love ginger and all things in the Asian aisle of the grocery store! But I never would have tried anything new if nothing was taken away from me in the first place. Another new love I discovered was a love for design, for writing and creating things. I found these passions only after I had lost others. Apparently I need to be dragged behind a horse before I’ll go out and try something new, but if that’s what it takes, then so be it!

3. The Gift of Real Relationships

Back when I was a healthy(ish) person, I could get away with relating to friends on just a few levels: drinking, boy-talk and general life drama. I would date people with whom I had very little in common, knowing that the relationship was shallow, but not being bothered to change a thing. I could float along through college, not caring which of my relationships were genuine and which were fake. But being sick turned that way of thinking upside down. My illness, my life restrictions and my lack of energy acted as a sieve that very quickly filtered out all of the friends and acquaintances with whom the relationship was not built on true love and caring.

I learned that when things get difficult and suddenly it is not super-convenient for someone to relate to you, a lot of people fall away. That doesn’t make them bad people, it just makes them not the right people for me. I am guessing most people don’t figure out who really cares about them until they hit a mid-life crisis or develop some life-altering disease later on in life, but I had the benefit of watching my weak connections fall away in my early 20s. Now I know that any friends who have stuck around through the hard times are the ones I really want to spend my “spoons” on.

4. The Gift of Gratitude

Yes, this is such a cliché, but it’s true: you really don’t appreciate things until you lose them. For example, you don’t realize how much you adore and depend on your smartphone until it breaks and you have to go without it for a week. You also don’t think about how amazing your body is until it starts breaking down on you. You aren’t cognizant of your every heartbeat until you have a heart condition and each beat is no longer a guarantee.

I used to take things like my eyesight, my balance and my breathing for granted. But now I am truly thankful for every heartbeat. I used to get bored so easily, and I was always looking for the next thrill in life. But now I see how beautiful life really is, even if I have to watch it all through my bedroom window. Now I cry a tear of happiness when I can step outside and bask in the warm sun for an hour. When you live in a dark cave, every little candle is like a blazing fire and you are that much more grateful for it.

In closing: I didn’t ask for these gifts, but I’m glad I got them anyway. They came wrapped in both joy and sorrow with a big, bright tag that reads: “No returns, refunds or exchanges. And you’re welcome.”

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Courtney Privett Creates 'She Persisted' Disability Illustrations

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Earlier in February, Sen. Mitch McConnell (R-KY) admonished Sen. Elizabeth Warren (D-MA) on the Senate floor for reading the words of Coretta Scott King in opposition to Donald Trump nominating Jeff Sessions attorney general. Commenting later on his dismissal of Warren, McConnell remarked “She was warned. She was given an explanation. Nevertheless, she persisted,” words that, unbeknownst to him, would embolden women across the world.

One woman giving those words new meaning is Courtney Privett, 34, a California-based author and illustrator, who uses “Nevertheless, she persisted,” as the theme for a series of illustrations around chronic illness and disability.

“The original illustration was a personal project I created out of some of my own experiences. I’ve heard a lot of negativity in my life and kept going in spite of it, so the piece was art therapy for me,” Privett told The Mighty. “One of the first versions I did was called “We Persist,” about things said to people with invisible disabilities and chronic illnesses.”

The illustration which features speech bubbles filled with comments such as “You’re so brave,” “You don’t look sick,” “You’re too young to be sick” and “But you look so good,” comes from Privett’s own experiences living with several chronic health issues including narcolepsy, depression, anxiety and chronic kidney stones. “Over the years I’ve been misunderstood, insulted and pushed aside, both intentionally and unintentionally, by people who don’t understand what I’m going through,” Privett explained. “I’ve tried to turn all of that into a positive, though.”

Even the way the comic is designed is inspired by Privett’s experience. “The thought bubble layout came from the way my mental illnesses like to throw invasive thoughts at me,” she said. “Sometimes those negative thoughts are so loud that it’s hard to convince myself that they aren’t true.”

After her first illness-inspired illustration, Perth was asked by the Perth Sisterhood of Support, to make an illustration about endometriosis.

 

 

“I felt it was important that I not speak for other people whose backgrounds and experiences are different from my own, but rather work with them as they speak for themselves,” Privett said of her collaborative pieces. “I’ve always been quiet and shy, so it’s a little overwhelming to find out that my own voice has power.”

So far, Privett said, the response to her illustrations has been positive. “I’ve had a few trolls here and there, but I’ve found they don’t bother me like I feared they would,” she added. “If anything, they prove my points, both that the language we use toward others matters and that we can continue to persist through what is thrown at us.”

Privett is currently working on more posts featuring a variety of different conditions. Her most recent disability-related post featuring a woman in a wheelchair was inspired by a comment from a follower about the comments her child, who uses a wheelchair, receives.

“Often times, we aren’t aware that we’re saying something that is hurtful to someone else, simply because we haven’t personally experienced their situation,” she said. “[O]nce we realize how much our language matters, we can work toward speaking in ways that raise those around us.”

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15 Lies People Believe About Staying Home From Work With Chronic Illness

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When you stay home from work or don’t have a job because of your chronic illness, it’s hardly a vacation. More than likely, your symptoms are flaring to the point where you physically can’t work, and you’re spending the day dealing with pain and fatigue, not having fun. But to outsiders who have only experienced illnesses that get better after a couple days, not working due to a chronic illness may (wrongly) seem confusing or unnecessary (especially to those who claim you “don’t look sick”), leading to hurtful comments that it “must be nice” to stay home.

We asked our Mighty community to share the lies people tend to believe about staying home from work or not working because of a chronic illness, and the truth about what it’s really like. It’s just not true that people with chronic illness are off enjoying a little vacation. Next time your co-worker or friend is out sick or not working, remember that they need support, not judgment.

Here’s what our community told us:

1. “People seem to think it’s a holiday and that I’m lazing about enjoying myself, but in reality I’m tired and in pain and/or feeling sick. All I want is to be able to go back to work and be a productive member of society. Living like this is not anywhere close to a holiday.”

2. “People think I’m cooking or cleaning when it really takes all my strength to get up to go pee or get a glass of water.”

3. “[Co-workers think] waking up any time after 8 is a ‘sleep in’ when in reality it’s never enough sleep. When I say I got up at 10 a..m. or 1 p.m. to shower and they call it a ‘lazy day’ when in reality it’s a regular, difficult and far-from-lazy day. I can actually remember exactly where I was and when it was the last time I woke from sleep feeling like I used to before I got sick (energetic and well rested) because it’s only happened once in the last five years.”

4. “[People think] I cancel appointments or call in to work flippantly, secure in my own sense of entitlement. Instead, I experience crushing guilt and spiraling anxiety when I’m least able physically and emotionally to deal with it.”

5. “We aren’t ‘resting’ when we are in bed. When the body is under attack it is fighting to survive, there is no ‘resting’ involved!”

6.I hear, ‘I’m so glad you got a day to relax. I bet you feel better.’ Nope, I don’t. I just needed the day to continue surviving. Because, I just couldn’t.”

7. “I’ve been asked: ‘Why can you still go on a vacation but you can’t work?’ Or ‘You look just fine on Facebook’… as if because I can’t work, I should never be allowed to enjoy myself, ever!”

8. “You’re over-exaggerating your condition. My last manager seemed to think I could work from home even in a bad flare. I have Crohn’s disease and rheumatoid arthritis. When both flare I can’t even dress myself! I cannot get up and down stairs and end up bed-bound in agony. When they see me in the office I look ‘fine,’ I just have a bit of a limp. Yeah, because at that point I’m having a better day with my health. What they don’t understand is how much effort it takes to get into the office.”

9. “I think a misconception is that a sick day is a day of rest when it’s really a day of struggling endlessly to find any sort of bearable way to relieve symptoms.”

10. “[People think] if you looked fine yesterday and return to the office ‘normal,’ then you weren’t really that sick to begin with. They don’t understand that if they felt like we do on our ‘normal’ days, they’d probably never make it into work.”

11. “I get frustrated when people say they work because they cannot afford not to, but it’s not always a choice of finances over pain/illness. Every time I tried to return to work I was told no.”

12. “Often people seem to equate work absence due to chronic illness with work absence due to acute and temporary illness (even something as simple as a cold). They believe it’s an experience with discrete boundaries and a definitive recovery signaled by the ability to return to work. In reality it is a constant series of negotiations and sacrifices.”

13. “People mostly comment on how I’m not working, or ‘skipping’ things, like I’m picking and choosing and using being sick as an excuse. But they don’t realize how frustrating and sad it is to miss all of those things, as well as the outings or opportunities I miss that they don’t see.”

14. “[People think] it’s fun. It’s really not fun to stay home and be unable to work! I’m not having fun, I’m often in bed in a lot of pain. I’d love to be able to work!”

15. “People think we have less to do. Managing the eight-plus specialists, therapies (physical and psychological) family and home is so much work. Also diets and trying to find answers is a lot of work. Also everyday activities take accommodations and three times as long at times.”

What lies do people believe about not working due to a chronic illness? Share in the comments below.

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