25 Secrets of People With Chronic Illnesses

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Nearly 133 million Americans have some sort of chronic illness, and that number is expected to reach 157 million by 2020, according to data on the Invisible Illness Week website.

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From exhaustion to migraines to fatigue, many chronic illness symptoms aren’t visible to the naked eye, which makes them even more difficult to diagnose — and understand.

With a growing number of people affected by chronic illnesses like fibromyalgia, arthritis, Lyme disease, Crohn’s disease and diabetes and more, it’s important to both raise awareness and let others know how to respond to the needs of individuals living with these conditions.

So we asked readers in our Facebook community what truths about chronic illness they wish others understood. Here’s what they had to say:

1. “Some days you can function, some you can’t.” —Amber Wandmaker

Woman on beach

2. “I’m not lazy. I’m in pain, exhausted and quite possibly depressed because I feel useless and cannot make others understand what I go through on a daily basis.” —Jodie Farber Brubacher

3. “It’s not in my head.” —Christine Olson Smith

Writing on notepad

4. “When I’m pushing through… I’m really pushing myself too hard.” —Debra Declue

5. “Just because you can’t see it doesn’t mean it’s not real.” —Rhonda Miller-Solomon

Magnifying glass, close-up, cropped

6. “Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to ‘get better.’” —Joan Elizabeth

7. “A good day for people with chronic pain… is often just ‘less of a bad day.’” —Ann Webb Bradford

8. “Being immune compromised/suppressed isn’t a game; it’s dangerous. When I say I can’t get sick, I’m not being paranoid; I’m being careful. Life’s no good when you’re dead!” —Arianna Nyswonger

9. “I’ve become an expert on hiding my pain from everyone.” —Beth Cox Harrell

Woman looking through blinds

10. “Chronic illness often comes in multiple versions; treating one can mean making another one worse.” —Zoann Murphy

11. “I can’t remember what ‘well’ feels like.” —Sandra Williams

12. “Good can change to bad in a matter of minutes. There are good days and bad days, but there are also good hours and bad hours, good minutes and bad minutes. Chronic illness does not see or understand time.” —Deanna Guarino-Embry

Clock on wall

13. “There’s no such thing as ‘too young;’ we can’t just show out bodies ID and tell the illness to come back in 10-20 years!” —Jen Andrew

14. “It doesn’t get better. It is this way. Every day. Forever. If you’re in my life, please don’t ask me if I’m feeling ‘better’ today.” —Wendy Rose

Old man feeling sick

15. “We shouldn’t be treated like drug addicts or hypochondriacs and denied the care we truly need.” —Amy Brandborg

16. “I live a double life. What you see when I am at work: someone who is well put together, always dependable, smiling, will always tell you she is doing fine. My reality: I’m a mess, in so much pain, my smiles are forced, sometimes I have to find a quiet place to cry. But it’s much easier for me to fake it because coworkers don’t want to hear my truth day after day.” —Amber Weller

Woman in front of mirror

17. “A ‘good attitude’ doesn’t take away pain or improve mobility. I am still human and I will have days when I just can’t drum up that ‘good attitude.’” —Vicki Gomes Petilli

Woman standing in field barefoot

18. “I didn’t do this to myself. I didn’t not pray hard enough or believe hard enough. I didn’t not eat well enough or not exercise enough.” —Barb Silvestro

19. “It hurts to be forgotten because we have said no to so many events, parties, family gatherings, shopping trips, etc. I want them to still ask just so I know they are still thinking of me.” —Victoria Sinclair

Upset woman with grey hair

20. “There is no magic cure. I don’t want to be sick, but this is my reality. I can’t wish it away or cleanse it away or take supplements because your sister’s boyfriend’s mother did.” —Christina Marroquin-Mauricio

Spoon with heart in it

21. “People don’t choose to feel horrible every day and lose the person they used to be.” –Caitlin Hoechst

22. “What I can do one day I might not be able to do the next.” —Becky Rider

23. “I’m not making it up. If I wanted to fake an illness, I would choose something that people would believe!” —Faith Merryn

Upset man

24. “My downtime doesn’t mean I’m depressed or isolating. It’s a time for me to heal and recharge.” —Kate Wilhelmi

25. “My illness does not define me, my dreams or who I am!” —Judy Fox Berryan

Woman on the beach

What’s one truth about chronic illness you wish others understood? Let us know in the comments below. And be sure to visit our new Facebook page, Chronic Illness on The Mighty.

All images via ThinkStock

25 Secrets of People With Chronic Illnesses

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On the Days I Wonder If I Am Chronically Alone

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That’s what it costs to get the children fed on a chronically bad morning. I’ll confess I am chronically ill. Tomorrow I will chronically deny it and tell you I’m fine. Today I admit it. Not as an excuse. It really is a bad day. I’m chronically fatigued and chronically in pain.

Especially my left second toe. It hurts so bad I cannot bear for the sheets or socks to touch it. And I chronically wonder if I’m alone. I chronically wonder if I can make it funny. And I chronically wonder if I will feel better tomorrow.

It isn’t funny. I chronically question why I’m laughing. I have a love-hate relationship with Facebook thanks to chronic flashback notices. I saw a flashback of my first half-marathon. Sigh. I have traveled 1,000 miles in five years flat on my back. Well, four years. It was a year after that I tore my calf muscle and got plantar fasciitis. And that started my descent into chronic.

Chronic steroid injections were the first culprit. But it doesn’t matter because here I am. Chronic. Chronically tired. Chronically weak. Chronically grumpy. Chronically chubby. Chronically blah.

And I want to be chronically comfortable. Chronically fit. Chronically energized. I just am not. And it’s is getting cold out. I have the chronic metabolism of a Barbie and the body temperature to match. I chronically dread the change of seasons. I’m chronically told I don’t look sick. And I have my loves that help get me through, and they know lots about what plagues me, and I chronically seek their wisdoms. And then I get a chronic headache. And all I want to do is sleep and eat processed carbohydrates. And the chronic circle continues.

And I feel chronically guilty because it’s not cancer, although at one point doctors thought it was. And I feel chronically sad that I chronically complain. And I’m convinced some days my family is sick of me.

And I’ve been to dozens of doctors and have chronic medical debt. I am chronically told, “Welcome to fat and 40!” Although, if they were chronic listeners, they’d have heard the whole mess started when I was 38. I’ve sat in my car outside their offices and chronically cursed them.

So I’d love to have a little cheese with my chronic whine, but I can’t have dairy. And who wants cheese if you can’t have a cracker and I’m chronically allergic to wheat. I’m chronically told what to eat and what not to eat. It’s chronically exhausting.
And I’m chronically sure I will manage. I chronically do.

In the midst of chronic abdominal cramping and chronic ickiness, I cope.

Tomorrow might be better. I chronically pray it will be.

I have friends who deal with chronic depression, chronic pain and chronic illness. We chronically rally and hold each other up. Other days the chronic struggle is chronically mine, and I just wish to be left alone.

So I had a chronic meltdown because the song playing on my iPod when I finished my first half marathon, “I’m With You…” by Avril Lavigne, came on the radio an hour after I saw the Facebook notice. I felt like a chronic failure. A failure who spends $8.65 on a chronically horrid breakfast for her chronically wonderful babies. A chronic flood of memories of when boiled eggs and fresh fruit salad were all I would feed my precious children for breakfast, on our way to 5 a.m runs. Which we chronically attended.

I feel all the pangs of chronic failure. As I barked at my daughter to hurry and eat her doughnut so we won’t be chronically late, I can hear “I’m with you…” in the background.

And they me see cry and chronically apologize. I’m assured they will need chronic counseling.

I’m chronically confident the counseling sessions will be short. I will go with them and readily admit it’s chronically my fault.

And I will chronically strive to be better. I will chronically follow my strict regime. I will chronically blog. I will be chronically honest. I will chronically speak wellness. I will chronically believe.

I’m chronically stronger than I give myself credit for. I’m chronically in love with my husband and my children. I’m chronically surviving. And on the days it hurts, it chronically sucks. But the other days I will chronically remember I’m doing my best. The children will be OK. There is joy amongst the heartache. Chronic hope that tomorrow will be better. And I’m chronically not alone.

Follow this journey on Sacred Ground Sticky Floors.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the People Who Think I’m ‘Faking’ My Invisible Illness, Thank You

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To the person who doesn’t believe,

It hurts when I’m called a faker, but when you don’t believe I suffer as much as I say, you cause just as much damage. Oh, and that “it could be worse” comment, that one hits me right in the heart.

Some days I sit down wondering what I could do to show you what it’s like when your illness is invisible. I know it’s hard to understand how one suffers so much when they appear as if they are doing so well on the outside. I believe that is a reflection of the strength that comes from within a warrior — that is exactly what we are. But rather than empathize with me, it seems you would rather drift away. Why is it that before you believe me, you have to see that mental breakdown, me collapsing in public or my limbs swelling and changing color?

It seems like you are fine with being there to support that person who breaks their leg or is going through an illness that medication can fix. My life doesn’t work that way. My life is more complicated, and I would be lying if I told you it doesn’t eat away at my feelings.

When you tell me “it could be worse,” please reconsider what you’re saying. It’s like me telling you during a time when you need me most, “Oh, it could be so much worse.” This comment is not comforting to me. Every illness is different, and everybody goes through different hardships depending on what illness they face. No two illnesses can be compared to each other. Please understand this.

Lastly, to the people who called me a faker and failed to believe me, I would like to say thank you. I’m thanking you because you made me appreciate all the people who have stood by my side that much more. You have taught me not to be upset when a person walks out of my life. Thank you for allowing me to build up a level of respect for myself that I might not have otherwise had. Thank you for allowing me to turn a negative into a positive and showing me that everything happens for a reason.

Thank you for allowing me to believe more than ever that I truly am a warrior.

Sincerely, me.

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Photographer: Leah Downie. Model: Anna Evenosky
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To Friends and Family Who Aren't Sure What to Say to Loved Ones With Chronic Illness

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When someone gets sick, friends, family and co-workers often may not know what to say. They’re scared they’re going to say the wrong thing, make someone cry, or commit some sort of faux pas. It’s a tricky subject, but I promise it can be worth it to acknowledge the elephant in the room. Both you and your loved one may be better for it.

The thing is, getting a diagnosis can feel similar to grief. How one person reacts is probably going to be different from how someone else reacts to the exact same diagnosis. Through not one, but two scary diagnoses, here’s what I’ve seen work best in these situations.

1. Do acknowledge it. If it’s going to be the elephant in the room, you might as well talk about it. It’s probably one of the biggest things we’re thinking about anyways, so it means a lot when you take an interest. 

2. Along those lines, do ask questions. A question about a diagnosis isn’t likely to break us. We’ve probably thought about every scenario and asked the same questions to our medical team. It’s usually not an untouchable issue. I promise.

3. Do offer help. And by help, I mean most of us are really stubborn when it comes to letting you know if we need something. If you say, “I’m here if you need anything,” we’re probably not going to ask for help. We’re just not. Try offering tangible ways to help like: “Can I bring you dinner tonight?” “Can I drive you to/from treatment?” “Do you want someone to come watch Netflix with you?”

4. Don’t try to offer unsolicited advice, especially when it comes to treatment plans. This includes: “Well, have you tried…” “You just need to…” “I have a friend that did XYZ and now he/she is back to normal life!” We have a team of doctors helping with that. 

5. Don’t say things like “But I thought you were getting better…?” or “But you don’t look sick?” or “You look great, you must be feeling better!” When living with a serious illness, you learn to try to live as normally as possible, and each day is usually different. Just because I put on makeup and curled my hair does not mean I am healed.

6. Do show up. The biggest thing you need to do is just be present — you don’t need to worry about saying the right or wrong things or feel like you’re walking on eggshells. I have the sweetest memories of friends who would come over and watch TV with me after treatment, and it meant the world. It may seem insignificant to you, but it’ll mean the world to the person that’s sick.

7. Finally, it’s OK to ask how they want to approach this situation! Ask specific questions: “Is this something you want to talk about today?” “How can I best encourage you through this?” “How are you doing, really?” This will help you both avoid any awkwardness about the topic and will help you navigate conversation around it.

Most of all, remember that no good deed, no matter how small, goes unnoticed. My friends who sent me packages, brought over Chipotle, sent me encouraging text messages, and just would sit and cry with me meant the world. You don’t have to be perfect — just be present.

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Elise (left) and her friends hugging.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Person With Chronic Illness Feeling Guilty About a Health Choice

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Managing chronic illness can be hard. Just keeping a healthy lifestyle is hard, even if you have good health, but the demands of chronic illness often require much more attention than a simple healthy lifestyle:

  • Careful pacing, not to mention the enormous strength of will needed not to overdo it on a good day.
  • Careful attention to diet and hydration.
  • The willingness to keep up with regimes and protocols even when progress is slow.

We all have little ways of sabotaging our self-help, often based in comfort-seeking to help us through our pain, discomfort and frustration. I’m pretty sure we all feel guilty for not having done the best by our health. It doesn’t always stop there either; it’s an easy slide into self-judgment and believing we’re less of a person for not being able to do what we believe we need to do.

But this beating ourselves up has got to stop. It doesn’t help. All it does is weaken our motivation further and introduce tension into our bodies, which can oppose any attempts our bodies might be making to put things right.

So how do we break that cycle?

1.  Self-compassion.

Remember that whatever you did that didn’t support your health, you did for a reason. It may have been an unconscious message from your body using old behavior patterns in an aim to get your needs met, or it may have been a conscious “stuff it” decision. It may even have been a decision based on what you thought was right as the time, but you’d just misjudged somehow. Even if the resultant action didn’t support your health and well-being, it came from some kind of need inside you that you were doing your best at the time to meet. Be kind to yourself for the fact that you had needs pressing upon you. We often have a variety of conflicting needs, and it’s not always easy meeting one without doing harm to another. If the needs of our health are suppressing our other needs, from time to time they are going to scream out and we’re going to want to do something about them. That’s normal and understandable, and any suffering involved is worthy of our own self-compassion.

2.  Recognize the need.

Looking back on our mistakes gets us nowhere unless we choose to learn from them. There are many things we do that we are better off just putting behind us, however if a particular kind of thought or action is regularly sabotaging your attempts at meeting your goals, it might be worthy of some scrutiny. What was the need you were trying to meet? Can you brainstorm other healthier ways to meet that need when it presents itself again, or even in advance of it pushing itself upon you again?

3. Recognize that it’s not what you did in the past that counts but how you move forward.

The past can’t be changed. Beating yourself up won’t have any influence on what has already happened, but choosing a positive forward path from here can be empowering. Part of that path needs to be compassionate forgiveness; another part, a wider awareness of your conflicting needs; another part, an action plan for how to balance your needs better in the future. But most importantly is the willingness to just let what’s happened be.

4. Trust that you are doing your best.

Believe in yourself! Trust that on each occasion, you are doing your best, and that you have the potential to grow and learn how to do things better. Understand that whatever you are doing is enough, that you cannot expect more of yourself than your body can give. It isn’t the end of the world if you don’t achieve everything you’d hoped for; your improving well-being has its own pace, and you can only go as fast as your combination of needs will let you.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

Follow this journey at ME/CFS Self-Help Guru.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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9 Acts of Kindness That Have Brought Me Joy in the Midst of Pain

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Today I’d like to take some time to celebrate the unsung heroes who exist in our ordinary lives; those who sacrifice a portion of their lives to support someone struggling with an illness or difficulty.

Kindness is a rare human trait these days, yet I believe these simple, sincere acts are what we will remember with fondness for the rest of our lives.

Kindness has power. It is one of the only things with the ability to bring true joy in the midst of pain and suffering  a quiet rebuttal to despair. Kindness is an inspiration to life. Kindness can mean the world to someone in agony. I have been blessed with kind acts throughout my life, from close relations, acquaintances and even strangers. Here are both some big and little things they have done, engraved in my mind for all eternity:

  • Showering me as I huddle on the bathroom floor, immobilized by pain.
  • Blow-drying my hair, feeding me or lifting me up when my joints are too swollen to bend or stand.
  • Jumping out of bed at 3 a.m. and insisting on accompanying me to the hospital during a major flare or heart palpitation episode, then heading off to work right after without complaint.
  • Napping in a hard, tiny chair overnight at the hospital, just to assist me with simple chores I am momentarily unable to do, such as pouring a glass of water.
  • Staying up late into the night just to massage my swollen muscles or comfort me while I beg for help.
  • Helping out with work projects I took up thinking they would be easy to do, yet could not complete due to indescribable fatigue or pain.
  • Washing my hair with a small bowl of water as I sat in a chair a day after heart surgery, knowing it would grant me simple pleasure.
  • Throwing surprise birthday parties over the years when I was too sick to leave the house. Also for presenting the most thoughtful gifts ever, and not giving a damn that I was clad in my pajamas.
  • And most importantly, for treating me like a normal person, and having faith that I will be better tomorrow.

These are just a small selection of what these heroes do in silence day in and out, with nary a grudge or complaint. The biggest acts are always the small, consistent ones.

A curious question to those who also suffer from a chronic illness — are these situations similar to yours, and what are some other acts that you are and will forever be grateful for?

Follow this journey on A Chronic Voice.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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