What a Dolly Parton Concert Taught Me About Living With Chronic Illness

“You’ll feel better after seeing Dolly Parton. I promise.” These words from a friend were the deciding factor in spending some birthday money on an inexpensive ticket to one of Dolly Parton’s recent concerts. As I rode the escalator to the upper section of the theater, with my germ mask on and anxiety flickering through my brain from the overwhelming noise and motion of the crowd, I had my doubts about that.

I’ve never been a country music fan at all, but Dolly is Dolly. Like many people, I grew up hearing her music and I watched some of her films as a kid in the ’80s. As an adult, I’ve really admired her Imagination Library reading program for children, as well as her assertiveness and creativity. This article isn’t a concert review, but in case you’re wondering: her voice was beautiful and clear as a bell, she played multiple instruments and spun wonderful stories about her life and family and by the end of the show I had a huge smile on my face.

And in the middle of the concert she did something that stunned me: she sat down.

True to form, she didn’t have any old chair; she had a charming little porch set that magically appeared onstage. I was too far away to see if it was bedazzled, but I wouldn’t have been surprised. She sat on that porch and captivated the audience as she sang some of her most beloved numbers, including “Coat of Many Colors.”

Dolly sat down a few more times during the concert. Each new seating area was stylish and integrated seamlessly into the set. She was slightly under the weather, and told the audience she was sorry she had to use a tissue onstage. However, she never apologized for sitting down, and that was important. When she wanted to sit, she damn well did so, in all her rhinestoned glory, and held court from that porch or church pew.

As silly as it might seem, this was a huge thing for me. I have a very different life than Dolly Parton, but I’m in a world that wants me to stand…and doesn’t always understand when I can’t.

I’ve been dealing with this issue since I was in my early 20s. At first it was intermittent and due to orthopedic problems and injuries. However, I always eventually recovered, more or less. I worked at jobs where I had to do a fair amount of standing and spend a lot of time going up and down long flights of stairs. At some point, though, as my various genetic and autoimmune conditions began to truly take hold and my joints wore down more, I stopped bouncing back. I had to stop going to standing-room only events and noticed I was looking for seats more often.

It eventually interfered with work. A few years before I fell seriously ill, we had a meeting for professional development at my workplace. Unfortunately, we were standing for the entire discussion. After a little while I began to really hurt, so I took a seat on a nearby bench, where I was still close enough to hear what was being said. I’d only been down for a few minutes when one of my managers quietly ordered me to stand up again. Not wanting to argue in the middle of the lecture, in front of my colleagues, I complied. By the end of the half-hour presentation my hips and knees had locked and I was in absolute agony. The next day I spoke to HR, and was finally granted permission to sit down when I needed to do so.

Nowadays I begin to hurt after a few minutes of standing, and I really can’t do more than 10 or 15 minutes without severe pain. On a bad day, it’s much less than that. I have to keep shifting my weight from one foot to the other to try to minimize the pain, too. When I sit down, I constantly fidget and sometimes need to stand up again for a second to keep my hips and knees from locking, like a human Jack-in-the-Box. I still try to exercise and dance every now and again – for some reason, motion doesn’t hurt exactly the same way standing does – but it’s far less often and less intense than before, due to the pain and exhaustion left in its wake. My previous life, in which I walked a 5K six days a week, did flying trapeze and could dance for hours, is long gone.

Not everyone understands this, because society is all about standing right now. In an article for NPR, writer Angus Chen noted one of the recent catchphrases: “sitting is the new smoking.” Standing desks are promoted as a way to keep fit in the office, and there have been many media articles about how sitting will supposedly kill us. Nobody wants to be known as a couch potato. We’re supposed to be up and on our feet, and if we don’t “look sick” or as though we need that seat, we’re sometimes shamed if we sit down.

I know I’ve irritated some of my friends when I’ve tried to explain I can no longer do standing room-only events. People have raised their eyebrows when, in lieu of another place to sit, I’ve plunked myself down on the floor or leaned against walls. I’ve heard anecdote after anecdote about other people with disabilities or chronic illnesses who have been on the receiving end of nasty remarks or comments when they’ve needed to sit down or use a wheelchair or scooter.

Several years ago, before I became ill, a relative who also has some chronic health issues came to visit me. She knew she would not be able to walk around and stand in lines at my favorite theme park, so we rented an ECV (electric convenience vehicle, or scooter) for her. She was worried about people’s reactions to it. And I wanted to tell her that her worry was misplaced, except for the fact that I’d overheard snide remarks about ECV users from other guests at that very theme park. Luckily, most of the people with whom we interacted were lovely. Still, the fact that she would even need to worry about people’s reactions to using an ECV – and that it was almost enough to deter her from going to the theme park at all – really bothered me.

It shouldn’t be so hard. If you need to sit, for whatever reason, you should be able to do so without worrying. Nobody should be subjected to irritation, insults, anger or derision for taking care of themselves and doing what they need to do.

The next time anyone gives me drama about sitting down or bowing out of a standing room-only event, I’m just going to remember Dolly. What would Dolly do? She’d probably smile graciously, keep singing her heart out in all her rhinestoned finery and completely ignore those criticisms. You do what you need to do to look after yourself. That’s something I constantly tell myself, and Dolly helped remind me of it.

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Close up rear view shot of woman looking at sunset with words 17 mistakes people have made when they became chronically ill

17 Mistakes People Have Made When They Became Chronically Ill

When you first start experiencing symptoms of an illness, or when you first get a diagnosis, the learning process officially begins. There’s no handbook for living with a chronic illness, and considering how little understanding there is among the general population and even many doctors about the effects of being chronically sick, it’s understandable if you’ve done (or not done) some things to deal with your illness that you now regret.

We asked our Mighty community to share a mistake they made when they first noticed chronic illness symptoms and what they learned from it. If you have done these things, too, it’s OK — you’re not alone. We’re all in this together and learning how to navigate this chronically ill life.

Here’s what the community told us:

1. “My mistakes are many… my first is I try to push through because ‘someone else has it worse and they can do all these things I can’t. Maybe I’m just being a baby.’ Then I push too hard and I get worse. I can be down for a month at the least.”

2. “I kept fighting to return to ‘normal.’ I wish I could go back and tell myself it’s OK to grieve the life you lost, but it’s not all right to use your past to undermine the life you have now. Sure I miss hiking and school, but the parts of me that like nature and learning haven’t been taken from me. I don’t have to tie my identity to past capabilities. It is possible to find a balance between my interests and new physical limitations.”

3.I made the mistake especially with physical therapy of living by the motto of ‘no pain no gain.’ This would always make things worse, sometimes leaving me bedridden for days. My husband mentioned it to my physical therapist and she broke down why that motto is BS and from then on would constantly remind me not to overdo things.”

4. “When I was first diagnosed with Crohn’s disease I listened to what everyone said I should be feeling instead of listening to my own body.”

5. “Trying to ‘fix’ it. I didn’t accept that this was a new reality for me. With hard work and determination, anything can be fixed, right?! What I needed was some counseling or a support group to process the massive changes my illness has made to my daily life and my plans for the future. What I did was waste money, time, and effort pursuing anything that might help.”

6. “When I first became chronically ill with postural orthostatic tachycardia syndrome I made the mistake of withdrawing myself from everything. My only safe place was my bedroom. I rarely left the house. And because of that, I became agoraphobic. Also, I tried to keep my emotions and feelings to myself so I wouldn’t be a mental burden to others. I would later come to find that doing so only made me sicker.”

7. “When I was diagnosed with chronic migraine and chronic tension headache, every time I went to the doctor I hoped for a miracle. A pill, a shot, a surgery. Something that would ‘cure’ me. I always left disappointed and in tears when they couldn’t deliver. I am realizing that if I just take one day at a time, my outlook is so much better. I may never be ‘cured’ of the pain, but there are tools out there to help me manage. I am finally OK with that.”

8. “The biggest mistake I made was not telling any of my friends…. I was 13 when I was diagnosed with POTS and arthritis/tendonitis and I for some reason felt ashamed for it and I didn’t want any kind of questions or special treatment… I found out that people are truly understanding and there for me and that also I am not alone in this, my friends and family are here for me, and there are also so many others our there like me. Now I feel no shame talking about it and I will openly discuss my illnesses with anyone.”

9. “The biggest mistake I think I have made (and am still making) is not seeing the value in myself after being diagnosed. I was also making assumptions for others about how they saw me and what value I had to them. I somehow thought I wasn’t as valued unless I was doing everything as I could before. I remind myself that I am setting an impossible standard for myself and my value isn’t based on what I have done in one day, but how I have valued that day.”

10.Not believing I was chronically ill! So many doctors for so long said there was nothing wrong with me — and so many people did not believe me (friends and family) that I constantly questioned myself — to the point I would question doctors who did understand there was something wrong. I kept thinking it was all my fault… I ended up putting off real treatment for a long time because I convinced myself that there was really some magic cure out there — and ended up making myself a lot sicker than I already was.”

11. “The biggest mistake I made was refusing to ask for or accept help. I made myself worse because I was being stubborn and thought that accepting help made me weaker. In all reality, accepting help made me stronger. I am able to admit to myself what my limits are and I’m able to progress better with help.”

12. “I just completely gave up. That was my mistake, I just lay in bed all day every day for weeks and weeks, I refused to shower or eat and I was hospitalized and tube fed because all of the energy just left me. The worst mistake was giving up hope, and I did that because nobody had told me about how to cope! I’d only been informed about the symptoms and that made it so hard to know how to cope through the first few months. I hadn’t even heard of the illness before so if I’d known I’d been able to cope much more!”

13. “Thinking I would find ‘the doctor’ who would know how to fix it all or that it could be fixed. Now I’m just happy if one listens and at least tries to deal with their part of it.”

14. “I would feel good one day, so I wouldn’t take my pain meds that day. Boy would I suffer! Or I’d feel good and do something like rake leaves, etc… then I’d be in pain for weeks! It’s been 16 years. I have learned!”

15. “When I was first diagnosed with reflex sympathetic dystrophy syndrome, I convinced myself that if I were a perfect, compliant patient and pushed myself every day, I could make it all go away.”

16. “My biggest assumption/mistake was assuming every doctor makes an accurate diagnosis. Sometimes they don’t.”

17. “Believing that I had to fight all the time. Refusing to accept my diagnosis meant that I was denying a part of who I am. Accepting is not giving up. It is learning to love yourself, diagnosis and all.”

Have you made any mistakes in dealing with your chronic illness, and if so, what did you learn from them? Share in the comments below.

17 Mistakes People Have Made When They Became Chronically Ill
woman walking in tunnel

How I Deal With the ‘Why Me?’ Question

First, I feel it’s important to say that I am not, in fact, a heartless monster who hates the world and wants to tear down religion. That is not who I am or what I’m here to do. I am here to explain, from one point of view, how atheists who live with chronic illness might view the world and deal with living in it.

Even though I respect religious people and everyone’s right to believe what they will, I’m not religious and don’t have to be in order to have hope, joy and courage, even while living with chronic illness. I’m here to continue that conversation.

When we first become ill, or shortly after being diagnosed, a lot of people with chronic illnesses can start to ask themselves this all-encompassing question: Why, oh why, out of all the people in the world, did it have to be me? 

But that’s understandable. It feels personal when your life is torn out from under you. When the world becomes small, dark and painful, it’s hard to find things to be grateful for and easy to wish for another universe where you get better tomorrow or never become sick in the first place.

“Why did it have to be me?” 

I see a lot of people asking this question online in regard to their health; it feels like they’re grieving a former life for a moment before picking back up and continuing forward. It’s something we all do and often need in order to stay emotionally healthy through all of this.

Even though I certainly grieve and have times when I wish with all my heart I had never gotten sick, I don’t find myself asking this particular question: Why me? And, honestly, I think it’s because I’m an atheist.

As an atheist, I don’t believe in a god, gods and omnipotent beings. I don’t think there is some cosmic wisdom in the universe keeping us all safe and cared for. I think we’re all just people, living our lives. We do our best to get along and have joy, love and hope in our lives. We work together to make the world and ourselves better as we learn and understand more about each other and the world we live in every day. The more we understand something or someone, the less we fear them. That means more empathy, compassion and cooperation with each other, which is wonderful because if we’re all that we’ve got, then we had better take care of each other. This viewpoint is called humanism.

In a world where there are just people living their lives, it doesn’t make sense to blame anyone or anything for your illness, let alone ask why you were “chosen” instead of someone else. The universe wasn’t out to get you. I don’t believe there was a god trying to test your faith or teach you a lesson. The cosmos didn’t have an agenda that involved you becoming ill.

In this world view, it simply doesn’t make sense to wonder why it is that you, out of all the billions of other humans, have a chronic illness. There is nothing mystical that ties your chronic illness to other people. Genetics, environment and other natural factors can help explain the “Why did I become ill?” question, but the “Why me and not someone else?” question falls apart in the same way it would if you asked your parents why you got the genetic illness and not your next-door neighbor.

But, putting aside the idea that atheism may reveal some issues with this particular question, I think it’s more important to look at the question using my humanism — from a place of empathy.

The “Why me?” question is most often used to mean something more like: “I am grieving a former or possible life that I no longer get to live because of my chronic illness.” Perhaps it is better to say what we mean. That this is not the life we had planned to live and perhaps not the life we ever wanted to live. That we wish we could have more control and more choice in what our illnesses do to our lives. That we sometimes wish we could live another life free from this illness.

Even if none of this can happen, grieving is a natural part of dealing with a drastic life change, and it’s healthy to feel your feelings. I think it can be even more helpful when you understand why you’re feeling what you’re feeling. You don’t wish your illness on someone else; you just wish you had a better alternative. 

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Lead photo by Thinkstock Images

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When People Don't Realize They're Seeing the Symptoms of My Illness

Our town used to be a small town but somewhere in the 18 years we’ve lived here (in which our town population went from 1,400 to 12,000), we’ve become a suburb instead. Recently, after a doctor’s appointment, I was waiting to be picked up and found myself sitting on the steps of the corner of the business area in the higher-end, newer part of town, doing some people watching. I kept thinking it was weird that no one was making eye contact with me.

At first I thought it was because, even though people moved to our area for the small town feel, they weren’t actually what I think of as “small town people” — and I do think that was a big part of it — but then I thought about what people were seeing while I was sitting there: an older, overweight lady with no makeup, wearing a T-shirt and jeans in an area that has women dressing up even for a trip to the grocery store.

I greeted them with my broken-toothed smile, as my teeth are crumbling due to long-term use of some of the medications I’m on. I was at the doctor about the vertigo I’ve been experiencing so I’ve been swaying a lot, too, when sitting still or having to steady myself while walking. Oh, and it gets worse. I wore my coat because even though I was enjoying the sun, I get an allergic-like reaction to it so in an effort to try to keep my skin covered, I was really warm and all sweaty. Sitting on concrete steps is really hard on my body, so I kept getting up and walking awkwardly around and then sitting back down.

I kept thinking about the post I’d read by actor Wentworth Miller about people judging a meme which featured a photo of his past weight gain instead of understanding that he was struggling with depression and suicidal thoughts at that time. They were judging him based on wrong information about a struggle they couldn’t see.

I also thought about how often I use the term “invisible disability” to describe my illness when really it isn’t all the invisible anymore: the weight gain and the broken teeth caused by my illness and medications they used to treat it; the scars on my skin from frequent rashes and inflammation; the limping gait I have due to my deteriorating joints; the sway even when I’m sitting still due to inner ear inflammation; the tremor and the twitching from neurological aspects of my disease… the list could go on and on. My illness is not invisible; it just isn’t what many people recognize as a disability. People don’t understand what they’re seeing. They’re judging my book by its cover, not realizing that the story inside is in a different genre than what it looks like from the outside.

I guess I’m writing all this down to remind people that you don’t know another person’s story and judging someone based on appearance alone might cause you to jump to incorrect conclusions. That invisible illnesses are not always completely invisible. And that I’m guilty of all this, too. I hope to do better in the future. I hope you will, too.

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Lead photo by Thinkstock Images

Woman with eyes closed and text 23 things people dont realize you're doing because you have chronic fatigue

23 Things People Don't Realize You're Doing Because You Have Chronic Fatigue

To an outsider, things like taking the elevator instead of a flight of stairs or turning down party invitations might look like a reflection of your personality. But to a person with chronic fatigue, these can be coping methods that are essential to getting through the day.

We asked our chronic illness community on Facebook to share what things they do that others may not realize is because of their chronic fatigue. Their answers reveal the adjustments that often must be made in everyday life to save energy, and that healthy people may not realize how much of a difference these strategies make.

Here’s what our community told us:

1. “Make sure I have a ‘buffer day’ in between any exhaustive event and resuming life.”

2. “Wearing PJs most of the day if I’m not going out. Some days it’s too painful to move and I can’t do simple chores around house. It’s embarrassing at times. I feel bad.”

3. “Planning my showers. I made a comment at Christmas about how I wish our shower downstairs worked because most days I’d like to get take a quick shower but I don’t want to climb the stairs. My husband’s sister’s boyfriend said, ‘Wow, you’re so lazy.’ I was seeing red at that moment and it literally took every bit of willpower to not lash out at him.”

4. “I have to plan everything based on what I need to get done and how much energy it’s going to take out of me.”

5. “I lean literally all the time. On walls, on tables, on people, on carts. I get panicky if there isn’t something to support myself on.”

6. “I micromanage every single aspect and moment of every day to determine what I can and can’t do and figure out how to get things done. This in itself is exhausting.”

7.I don’t invite people to my house. It’s always a mess and I feel bad about that because I just don’t have energy to keep it tidy. I wear PJs all day every day unless I absolutely have to go out. My home is my refuge from the business of the world. The one place I feel comfortable.”

8. “People didn’t realize that at 25 to 33 years old my dad drove me places a lot because I had brain fog from chronic fatigue.”

9. “Finding a quiet room at work to close my eyes and rest in the middle of the day. Sometimes, just being away from people for a few moments allows me to recharge just enough to push through.”

10. “Exercise. It sounds counter-intuitive but if I don’t my symptoms get worse. So you stretch through the pain and push just the right amount.”

11. “Curling up under a mountain of blankets. The weight comforts me and makes me feel grounded. It stops the spasms that rock my body as well.”

12. “People often compliment me when I wear one of my wide headbands. Sometimes I let them in on the secret and say, ‘Thanks so much! It’s because I’ve been too tired to wash my hair so I’m covering it.’”

13. “Always wearing comfortable, non-restrictive clothes so at any given time I can lay down for a bit when it gets too bad.”

14. “I have myasthenia gravis and it can make chewing and swallowing difficult to impossible. In the evening, when I’m most fatigued, I often can’t finish my dinner. Waitresses insist on asking multiple times why I didn’t finish. It’s actually very intrusive. I should only have to answer yes or no to ‘Can I take your plate,’ without an explanation!”

15. “I spend a lot of time counting steps. For example, at the movies I know exactly how far the bathrooms and exits are. I’m not going to be the first out but I bet you I’ll make it!”

16. “Keeping my hair short. It’s out of practicality. Less hair to manage, brush, and wash saves valuable energy.”

17.Ignoring texts or phone calls because of severe cognitive difficulties and/or too tired to type or talk.”

18. “I eat microwavable food so I can eat instead of leaving half cooked food all over. I burn food from forgetting it on the stove or end up dropping it on the ground by accident.”

19. “It’s sometimes hard to explain to friends and coworkers why I take the bus two stops instead of just walking, or take a taxi when I could take the subway (all those stairs!)”

20. “I always got anxious about the invites to parties across town and the offer to just ‘crash on the couch.’ I’d usually go and just not drink. Not because I didn’t want to ‘party,’ but because I knew I wouldn’t sleep on a couch because I have such a hard time sleeping and because even one drink would make me feel horrible. Always got ‘party foul,’ ‘Stop being a drag,’ ‘Just one shot’ — Nope. A night out would equal about two days down.”

21. “Wringing my hands and wiggling my legs or rocking back and forth. I look like I’m rubbing lotion on my hands all the time but really I’m trying to ease some of the pain through my own body heat.”

22. “I always have to get a carriage at the market even if I’m only getting a few things — I need it for support or by the end of the trip I’ll barely be able to get to my car — the worst part is just standing in line to cash out! That can actually ruin a ‘good’ day.”

23. “I don’t leave my house on Mondays. I frequently overdo it on the weekends with family and friends. So I need a day for recovery — I don’t open the blinds, I don’t answer the door, I unplug/turn off the phones, and stay in bed resting until I get up to make dinner.”

What things do you do that people don’t realize you’re doing because of your chronic fatigue? Share in the comments below.

23 Things People Don't Realize You're Doing Because You Have Chronic Fatigue

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