27 'Habits' of People With Chronic Illness


Navigating life with chronic illness can be tricky, often requiring a lot of trial and error to figure out what accommodations work best for you. As you adjust to a different lifestyle in which illness is a constant yet unpredictable presence, you may find yourself developing “habits” that help soothe symptoms, distract you from pain or make life as comfortable as possible.

We asked our Mighty community to share some of the “habits” they’ve developed to get through the tough moments with chronic illness. Some of these habits may sound familiar, and others might provide you with some new ideas to incorporate into your routine.

Here’s what the community told us:

1. “I ‘nest’ a lot on bad days. I tuck myself in bed with a mountain of pillows, blankets and heating pads, keep my TV and Xbox controller in hand’s reach, make sure I can reach my phone charger and then eat snacks and drinks in bed all day.”

2. “My habit is a saying that developed after people continuously asked me how I’m doing… My answer is always, ‘Well, I’m still alive.’ I suppose this habit is really part of a larger habit of me trying to be positive and laugh in the face of myasthenia gravis.”

3. “I treat myself to a hot bath every night. I know it doesn’t sound like much, but it’s my ritual. It’s 20 minutes of quiet time to myself. Plus it does on occasion give me some relief from pain.”

4. “Since I am very light-sensitive, I have sunglasses everywhere: my truck, my purse, two or three in my room, two or three more (back-up pairs) in a drawer… and I keep a pair in my office.”

5. “I double calendar everything. I’ve had a lot of problems with ‘brain fog’ and I don’t want to miss appointments or double book. Plus my kids have events and appointments too. So everything goes into my calendar on my phone and onto the wall calendar in the kitchen!”

6. “Sitting down in the shower to shave because it’s easier on my joints. I forget sometimes that a lot of people stand to shave.”

7. “Rocking my body back and forth. Sometimes I don’t realize I’m doing it but it is either because I’m exhausted or I’m overstimulated and need to calm down.”

8. “I turn on the seat heater when I drive. It helps my back and hip pain.”

9. “I start the day watching funny videos on YouTube or Facebook. Anything to laugh. It gets endorphins going and makes it hard to begin the day on a bad note.”

10. “I love to read. It gets me through pain, exhaustion and emotional breakdowns. I always have my e-reader with me.”

11. “Starting in my early teenage years I began an afternoon nap habit as a result of the unrelenting fatigue. I’m 40 now and still take a nap every afternoon.”

12. “When I’m on my cane or in so much pain I’m having trouble walking, I count to either two or five steps, each time telling myself I just have to get to five. So I’ll continue to muster up the strength to walk and it also takes my mind off the pain.”

13. “I have gotten into the habit of recording my pain each day out of 10 in my diary so I can look back and see if what I’m changing in my lifestyle is working.”

14. “A tall glass of red wine every night. It helps the muscle spasms to relax. Plus it has healthy antioxidants.”

15. “Keeping everything together as close by as possible, so as to avoid unnecessary painful movement. Water bottles, meds, snacks, laptop and phone (and chargers), stack of books, blankets, pillows, socks and pajamas are all an arm’s length away from my bed.”

 

16. “It’s perhaps a bad habit now, but putzing on my phone, texting my closest friends and watching DVDs are how I decompress after work. Usually after work I’m burnt out, so nothing gets done on a work day.”

17. “My habit is making sure that on bad flare-up days I have enough to drink and some snacks on my nightstand so I don’t have to get up and down all throughout the day, and so I have enough to eat to take my medication with.”

18. “I always have an earphone in, playing specific artists. I suffer from constant pain, and having music playing stops my sensors from being overloaded. Works really well in large crowds, such as shopping centers.”

19. “I ask myself, ‘Who am I doing/trying to do this for?’ It’s OK to go over the limit of what I should do and pay for it later if it means going to an event I’m really looking forward to or making someone I love happy. But so often I do things because I feel obligated, because I said I might go and feel bad going back on my word… I’ve learned my health is worth more than what others might think.”

20. “I have a habit of collecting my hospital bracelets after I get out of the hospital as it reminds me that I won yet another battle. It seems odd but for some reason I hold onto the bracelet feeling empowered that I walked away from what tried to defeat me again.”

21. “I’ve gotten into the habit of having several pairs of fuzzy socks and pajamas on hand. They keep me warm but not overheated and the socks specifically have a comforting effect.”

22. “Saying what I’m doing out loud so I don’t forget what I’m doing – like if I’m walking down the hallway to put milk in the fridge I’ll say, ‘Putting the milk in the fridge,” or if I’m looking for my keys I’ll keep saying, ‘Looking for my keys’ so I don’t forget what I’m looking for.”

23. “I have a five-year diary that is purely for for writing down one good thing that’s happened each day, however big or small it may be! It might be I managed an evening out one day, or it might be I stayed in bed all day watching Disney movies another. But it forces me to search for the good in every day.”

24. “I bend over when I stand still so I don’t pass out. If I keep walking I’m fine, but if I stop at a crosswalk I have to bend over or I get dizzy and black out due to tachycardia (POTS).”

25. “I developed a habit of not comparing myself and my life to that of a healthy person. I am on my own time.”

26. “I shower at night. Showering takes a lot out of me so I shower in the evenings and I only shower every other day. I use those face wash wipes or homemade wipes the other days to clean myself up a little bit.”

27. “I get up before dawn, walk my dog, feed the cats. Then I watch the sun rise while I take some photos, drink tea, listen to music. Or just take that briefest moment taking in the sunrise. A lot of days start very early with pain and nausea. I needed to reset that so – even with pain and nausea – I can start my days with gratitude and a bit of peace.”

What’s a “habit” you’ve developed due to your chronic illness? Share in the comments below!

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Please Stop Comparing Your Cold/Flu to My Chronic Illness


Living with an illness is hard enough on its own; you comparing your symptoms to mine doesn’t help.

When you have a cold and get tired, you may take a nap. If that works for you, that’s awesome. But when I’m fatigued taking a nap doesn’t help. So please stop telling me, “Take a nap, you’ll feel better.”

 

When you have sore muscles from the flu, Tylenol may help you. If it does, that’s awesome. But when my muscles hurt taking Tylenol doesn’t work. So please stop telling me, “Take Tylenol, it’ll help.”

When you compare our symptoms it makes healing that much harder for me. It makes me feel like nothing I try is good enough. What works for you doesn’t work for me. It’s not as easy for me to cure a headache or to relieve my chronic fatigue. It makes me feel like my symptoms don’t exist when I can’t cure them. Your comparisons don’t help; they hurt.

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The Persistence of Happiness in the Face of Illness


I spend a lot of time trying to convince people I am struggling, I am in pain, that this experience has been at best overwhelming and at worst completely devastating. I am desperate for understanding, but somehow I have come to believe that in order to obtain it, happiness and pain cannot exist simultaneously. I leave the good parts out because I am convinced they can never help you see the tension that exists between who I was and who I am, they cannot show you the depth of my pain or my exhaustion and they will never be able to explain how I have become consumed by this, why it takes up so much space in my life.

But, as I write and write and write and watch my friends and family read my stories, with their praise clouded by remarks about how sad it is, I am beginning to realize that genuine understanding comes only from truth, and that means all of it. My truth is that even at its worst, my pain has been nurtured by hope and strength and love. There are still good days. And even on bad ones, there are incredible moments.

My boyfriend rubs my shoulder to comfort me and I wince in pain, jerking away, but there is so much tenderness in his touch, so much love in his eyes, so much warmth in his smile. I go out drinking with my friends and find it hard to move in the morning, but the sound of our laughter still rings in my ears and the memories linger with me for days. My little sister wants me to throw her in the air and chase her around the yard and, even though it sets my skin on fire, her uninhibited joy rubs off onto me a little more each time I say yes.

The sun keeps shining even as I curse it for rising in the morning. Happiness persists, just as the pain does.

 

But regardless of my knowledge that beauty continues to exist, even in darkness, I still write about fibromyalgia only when I feel sad, when my heart is heavy and all I want is to reach out a hand and find someone reaching back. I assume some part of that is true for anyone reading or writing here. We are all looking for a hand to hold as we stumble through our fractured lives; we are all looking for understanding. Unfortunately, sometimes that yearning for understanding can get in the way of the truth (yes, all of it). Sometimes, despite our best efforts to rise above it, we get lost in the pain and forget to appreciate the little pieces of happiness we find hiding in corners.

But even in pain, we deserve joy.

In my darkest moments, there are still flowers and kittens and memes about Nickelback and that one picture of Donald Trump’s glutes as he gets on his plane. There will always be pain, but there will also always be chocolate and soft pillows and gentle breezes on hot days. There will always be people I meet and know who make me feel alive and loved and strong. And if I let myself let go of those glimmering shards of light, I am letting go of myself…and becoming my illness.

Something you learn early on when you find out you have a chronic condition is just how little you can actually control. Your tiny, human hands seem smaller than ever, and you realize that life keeps moving, even when your world is standing still. Even the healthiest of us have very few moments in which we can give a middle finger to the universe, in which we can choose what comes next. I can’t promise I will continue to write about happiness and love and rainbows and unicorns and whatever else…but this post is my middle finger, my opportunity to choose. And in this moment, I want the universe to know that despite its best efforts to direct me elsewhere, I am choosing happiness.

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How I Relate to Princess Ariel as a Chronically Ill Woman


“I wanna be where the people are
I wanna see, wanna see them dancing”

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If you’re unfamiliar with Disney’s “The Little Mermaid,” which is likely very few of you (and if you are, you should watch it!), it’s about a mermaid who dreams of being part of the real world, above the sea. She watches the real world from afar in her underwater kingdom, constantly daydreaming of growing legs, leaving the sea and experiencing what seems like true life to her.

If you’re living with a debilitating chronic illness, doesn’t this sound a little familiar to you? I don’t know about you, but since becoming ill in a life-changing way, I tend to feel like I’m living in some sort of bubble, or rather outside of some sort of bubble while the real world continues around me while I look at it through a glass wall.

 

I watch my friends grow up and their careers take off. I see pictures of beautiful smiles on their faces while they’re out having adventures with their friends. I’m watching them graduate and begin living out their dreams. I’m watching them experience some of the pure joy and the priceless memories that are supposed to come with life.

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“Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin’ free – wish I could be
Part of that world”

Sound even more familiar now? We dream of being part of their world.  A world without pain, a world where our bodies function the way they should, allowing us to do all the things we dream of doing. Now that’s not to say there’s anything wrong with living a life with illness. We can thrive exceptionally. But until you find your perfect place in the community, it can really feel like you’re a ghost watching everyone do the great things in life you’re waiting for your chance to do. Also knowing those exact things may never be possible.

“When’s it my turn?
Wouldn’t I love, love to explore that shore up above?
Out of the sea
Wish I could be
Part of that world…”

But just because those exact same things they do may not be possible for us, we have our own set of opportunities. We do things people expect us not to be able to do every day. We get to live under the sea, and above the sea, and see things from vantage points most people never get to see. We appreciate the good that much more. We know life is short. We watch our friends do the seemingly impossible. We gain compassion, understanding and gratitude for the little things in life. We see a whole different side of the ocean.

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To My Healthy Best Friend, From Your Friend With Chronic Illness


Dear Healthy Best Friend,

I love you more than words can say. I am forever thankful for the hours you have spent listening to me cry and complain about medicine, helping me with my infusions and dealing with me while I am on a rough batch of steroids.

Thank you for trying to understand my illness. In the last three years, you have probably learned more about the human body than you would have in anatomy class. One of the most amazing feelings is being able to talk freely in the medical language I have become familiar with and having you understand it. I understand this is a difficult task, and one that definitely does not pertain to you.

Thank you for understanding. As you know better than I do by now, my illness is unpredictable. There are days I feel like a million dollars and the next day I wake up barely functioning. Thank you for being so considerate if I have to cancel, and always supporting me when I am sick. Nothing brightens up a sick day like receiving a text from you telling me to feel better and hoping I get better as soon as possible.

 

Regardless if I am an emotional wreck due to steroids, thank you for always being there for me and reassuring me. No matter what, I know I am able to turn to you and trust in you to understand what I am going through, and to offer me hope when I am struggling to see it. I did not choose to have a chronic illness, but I believe it is one of the most amazing things that you chose to stay by me with my illness. I love you so much and the words above cannot begin to express my gratitude for everything you have done for me as your chronically ill best friend.

Love,

Your Chronically Ill Best Friend

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Thinkstock photo via AntonioGuillem.

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10 Silver Linings of My Illness


Often it can be easy to find ourselves lost in the hardships, negatives, anger and upsets of the things we face, both with illness/disability and other aspects of our lives, but there is more. The clouds of our lives are etched with silver, and here are some of the places I have found it.

1. Because I am ill, I have gotten amazing opportunities! Being ill has lead me to writing for The Mighty, talking about issues I care about, and one day, if I can, I’ll be able to direct it into motivational speaking (which would be incredible!).

2. Because I have been ill, I have had a chance to develop my compassion and empathy (and medical terminology/trivia, a great party trick!). I can now relate to new groups of people, and want to help make things better. Ultimately, being ill has made me kinder.

3. My illness has given me insight into my own ability to cope. I am braver and more capable than I thought I was. Sure, I have my days when things seem too hard, but I have always picked myself back up, dusted myself off and tried again, and without illness in my life, I might never have known I could do that.

 

4. Being ill has led me to explore hobbies and avenues I might never have otherwise found. Now an aspiring writer, pre-illness karate-kid me would never have the time!

5. Illness has given me anger, sadness and pain. None of these sound especially like silver linings, do they? But they have given me a comparative gauge. In the darkness of the hardships, the light of joy stands out so much brighter.

6. Without my illness, I might never have had some of the most defining moments of my life. My proudest accomplishment is walking again, despite being told I wouldn’t, and my biggest wave of gratitude came during a surgery for a mum who was there when I needed her to be. Neither of these would have happened without my illness to have stood on.

7. Because I am ill, my achievements sometimes have a little more power and seem a touch more dramatic. Graduating high school? Well, maybe a year late, but isn’t it cool that nothing held me back? Publishing a book? I’m still waiting on that one, but if it happens, I bet it will be sweet!

8. Being ill has shown me who loves me most and it has strengthened those bonds.

9. Illness has given me the drive for positivity and optimism. I’ve never been as much of a glass half-full person as I’d have liked to be, but illness has shown me how much I really do want to be, and has inspired me to work towards it.

10. Illness has shaped me. It has made me who I am, and, for better or for worse, I am glad it got the chance to.

We all have our sorrows and hardships, but I am finding new silver linings every day, whenever I take the time to pause and look for them. Illness/disability has been the dirt dumped on me, but without a good foundation of soil, how could I ever have expected to bloom?

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Thinkstock photo via Ricardo Reitmeyer.

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