33 People With Chronic Illnesses Share the Best Advice They've Received

5k
5k

When you’re sick, you undoubtedly hear tons of advice. “Just breathe.” “Relax.” “Think positive.” Sometimes these cliches work for you, and other times you just want someone to get real. We turned to our chronic illness community to share advice they’ve heard that actually helped them. We hope at least one of these strikes a chord with you.

Here’s what they had to say:

1. “Something you can do today, you might not be able to do tomorrow, and it’s OK… Just do what you can, and don’t let anyone make you feel bad for the things you can’t do.” — Linda Wilbur Scott

2. “You can decide to live your life anyway. It’s going to hurt whether you’re in bed or taking over the world. Don’t let this dictate your future.” — Manda Baca

3. “Learn how to advocate for yourself. You know your body and condition better than anyone else. Don’t be afraid to speak up and push for better care; always do your own research.” — Carris Brown

4. “With some of the pain, you have to take it an hour at a time instead of a day at a time. Let the tears flow.” — Sharon Lambkin

5. “Accept help when offered. I’ve always been fiercely independent, wanting to achieve it all on my own two fee. But when the complications from my diabetes affected my mobility and capabilities after the birth of my children, I found it difficult to admit I was struggling. When help was offered I was gracious, but declined, running myself physically and emotionally into the ground. Then I let one person in, a lady who offered to do the nursery run. It changed my life. I was able to recharge my batteries, save the little precious energy I had for more productive things. I now have a network of close people I trust to help when I need it. And I’m getting better at asking. They don’t pity me… they just want to help.” — Joanne Shearer

6. “Let go of the person you were, and learn to love the person you have become. It’s hard to do, but once you accept your new life, things become a whole heap easier.” — Sandra Spinks

7. “Accepting doesn’t mean you’re giving up or giving in. Acceptance is just acknowledging your life is different than you imagined it would be, and that some of the steps needed to reach your goals may need to be adjusted.” — Tia Borkowski

8. “Stop once a day to memorize one beautiful moment, be it as simple as a perfect spiderweb shining in the sunlight outside your bedroom window or your child’s smile — to remind yourself of the beauty of life in the difficult chronic illness moments that seem to suck the beauty and joy from the world.” — Tristen Wuori

9. “The best advice for me was learning that I have to pace myself. Even if I’m having a good day, I know now if I overdo it trying to compensate, I’ll feel even worse the next day. I have to remember that how I’m feeling now, not how I was before chronic pain took over my life, is my new normal.” — Pamela Jessen

10. “It’s all right not to be OK.” — Jackie Le

11. “Live life. When you feel good, do something enjoyable. When you feel bad, go to bed. Surround yourself with positive people. Don’t worry about tomorrow. Worrying about tomorrow will steal your today.” — Janet Oney

12. “Quit settling and do what it takes to ensure the best care.” — Angel Parrett

13. “The best advice, and honestly the hardest for me, has been to take my meds even on days when I feel good.” — Tanya Gray

14. “All you have to do today is not pretend that you’re OK.” — Victoria Churchill

15. “While life with chronic illness is a new normal, there is no normal with chronic illness; every day is different. From good to bad to so-so days, whatever you’re able to do is OK, even if that was just breathing. There is still meaning to life with chronic illness.” — Ali Zimmerman

16. “You feel how you feel, and that’s OK.” — Whitney Williams

17. “Find the good and positive things about your life now, living with an illness, and build from there. Just because you’re sick doesn’t mean you have nothing to contribute; you just have to do things differently.” — Bridget Flynn

18. “At some point you will get very sad and upset when you realize you’re not the same person you were and you can’t do what you did before. It’s OK to mourn the loss of energy, ability and former self.” — Rebekah Hale

19. “From my doctor: ‘Trust yourself, trust your body. You know what you are capable of more than anyone else, even more than I [do].’” — Cynthia Rhodes Alberson

20. “I live with cystic fibrosis and am fighting a very serious infection right now, necessitating three months on IV antibiotics. I’m also a third-year law student. Another lawyer with CF told me, ‘It doesn’t have to be pretty. There are no style points,’ in relation to finishing law school. It’s been very useful for me.” — Mariah Hanley

21. “The best advice I ever got was ‘grab the moment.’ I learned quickly it was the best way to live with a chronic illness. You can’t plan a week or even a day. Seize the moment. Each tiny, precious moment.” — Mary Stewart

22. “It’s OK to have bad days. Forgive yourself. Love yourself.” — Kerry Young

23. “There’s no shame in having to change your day. Only you, no one else, know what you need to function.” — Jackie Henning

24. “You are your own best advocate. You know your body and your situation better than anyone else, so be prepared to speak up for yourself, especially when it comes to dealing with doctors.” — Julie Pruitt

25. “Your best day today looks different from your best of yesterday, and that’s OK. Learn your limits, and stick by them. It’s OK to say no and not feel guilty about it.” — Heidi Mathey

26. “Keep close the few friends who love you unconditionally and want to be there for you. Let the rest fall away.” — Angela S. Davis

27. “Accept yourself where you are. No two days are alike, and if you don’t accept where you’re at each and every day, it’s easy to get down on yourself.” — Alexis Pearl

28. “Don’t be offended when someone says you look good. They know you’re sick, but there’s nothing wrong with accepting a compliment.” — Wendy Simpson

29. “I had an amazing physical therapist tell me, ‘You can come out of this feeling bitter or better. That’s up to you.’” — Tami Birk

30. “Don’t let the naysayers, the nonbelievers, the negative people cloud your mind as you battle your battle.” — Alexandria Hoehl

31. “Rest when your body is telling you it’s time.” — Kat VR

32. “Know it’s OK to say no.” — Sherry Cook

33. “When I was sick in the hospital, thought I was going to die, weak, scared, in pain, most people who visited me or called me would say, ‘Get better soon,’ ‘Everything will be just fine,’ ‘You are strong’ and of course that they love me. I appreciated everyone and all they had to say, but in my mind I would never get bed; I had a disease with no known cure… My brother called and what he said to me did help me: ‘Sis, I’m not gonna tell you to get well quick and get back to us soon. You take all the time you need, you let the doctors do their jobs and you let your family advocate for you… I’m not gonna tell you it will all be OK or will get better soon because you know what? What you’re going through sucks, it sucks bad. But I can tell you to just be in the moment, take all the time you need to get better and know so many people are here to help along the way. And don’t worry about making any of us feel better.’” — Gretchen McLachlan

If you have a chronic illness, what’s a piece of advice you’ve received that’s actually helped you? Let us know in the comments below.

5k
5k
JOIN THE CONVERSATION

The One Thing Chronic Illness Cannot Steal

630
630

I know so many of us in this chronic community cannot participate in society how we’d like.

Some of us cannot work. Some of us can only work part-time. Some of us cannot attend school or college. Some of us cannot drive or attend social gatherings. Some of us cannot talk on the phone…the list is endless.

Being limited in these ways is truly hard in a society that puts value on accomplishments and successes. It’s hard. It can be depressing. It’s diminishing and disheartening. But I’m sharing and choosing to live by another message.

The message that my value is found in my life.

Not how I live my life, but rather from the simple fact that I am living my life.

I have value, plain and simple, and that doesn’t change no matter what I do or don’t do with my life. If all I can do one day is watch BBC shows, I still have value. If I can travel to Europe and run a marathon, it doesn’t  matter; my value does not change.

And fellow chronic illness warriors, the same is true for you. You are brave for existing. You are loved for being your quirky, unique self. You are accomplished because you lived another day. Your value is found inside of you, not in your accomplishments.

And that’s something chronic illness cannot steal.

630
630
JOIN THE CONVERSATION

To the Emergency Room Doctors Who Think They See Me Too Often

4k
4k

Dear Emergency Room Doctor,

We know in the ER we are known as “frequent flyers” because we have the unfortunate distinction of having to visit so often. We know you consider us a drain on your department’s resources and you think we take valuable bed space from others who “really need it.” We know you wish we would stop cluttering the ER with our chronic conditions and see our primary care physicians instead.

Here are a few things you might not know:

You might not know it’s often a call to or from a primary care physician’s office that has us heading to see you. You are not our first choice for treatment, as ER waiting rooms are often filled with people coughing and sneezing with contagious colds or flu we do not want to risk catching. But either our primary care physicians do not want us to wait until office hours to start treatment or their offices are not equipped to provide the treatment we need.

You might not know that we already wait much longer than a person typically would before we give in to our families’ or primary care physicians’ requests to go to the ER. This backfires when we are asked “How long has this been going on?” — and answer with a time frame of days instead of hours. We see it in your eyes when you think, “This is not urgent if it has been going on for days, and the pain can’t be that bad if they waited this long.” The fear of being called a “frequent flyer” makes us delay coming, which makes us “non-urgent.” It is a cruel Catch-22.

We know you cannot “fix” us, and we do not expect you to create a cure during our visit. All we want is help getting through a difficult flare of our condition by means of supportive care and to make sure that nothing dangerous has happened in conjunction with our condition that needs to be addressed before it is too late.

We “frequent flyers” would like to have a working relationship with you where realistic goals are set and respect is given on both sides.

After all, our goals are the same: to get us out of there as fast as possible and keep us out of there for longer periods of time.

Sincerely,
A Frequent Flyer

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? 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

4k
4k
TOPICS
JOIN THE CONVERSATION

6 Things People With Chronic Illnesses Are Tired of Hearing

1k
1k

For some reason, people — even the most well-meaning ones — often find it necessary to comment on others’ illnesses. Despite good intentions, these statements and questions can come off as insensitive or just plain ignorant, and being on the receiving end is tiring. So we asked our readers with chronic illnesses to share with us some things they’re tired of hearing, and what they’d rather hear instead.

This is what they had to say:

1. “But you could do this thing or that thing before… “

“I’m tired of hearing, ‘But last week you were able to go for a long walk!’ It’s called having a good day, when my joints don’t ache so much. I wish people would say instead, ‘Do you need a hand with anything today? How are you feeling?’” — Pamela O’Regan

2. “You’re too young to have that.”

“Instead, [I] would love to hear silence or genuine polite curiosity — questions like, ‘Do you mind me asking why you use a cane?’” — Alicia Estadt

3. “You look fine.”

“As if that totally combats my sickness and makes it seem like I’m not really sick since I don’t have a visible illness. I would much rather them ask how I’m feeling instead of commenting on my outward appearance.” — Kristin George 

4.  “I couldn’t handle that if I was in your situation.”

 

“Umm… thanks? I’d rather hear, ‘I know you are strong enough to get through this.’” — Alana Schuurs

5. “Have you tried ___ (insert gluten-free/vegan/paleo or whatever other type of diet here)?”

“Unless you’re going to come over and cook for me on a daily basis and clean up after, I will continue to buy and eat mostly things that can be microwaved while I sit and wait… I would rather hear, ‘I know you have a hard time cooking. Can I come make you a meal or bring you a meal you can heat up later?’ I would love that!” — Christine Heckler

6. “It must be nice to stay in bed all day!”

 

 

“As a person with narcolepsy/cataplexy and chronic pain, comments like this are the absolute worst just because of the pure ignorance. Something a little more excusable but still equally bothersome is when I tell my friends or family or boyfriend that I’m tired and, trying to help, they suggest I do something like drink some coffee or get up and go for a walk and then I’ll feel better. They don’t understand that my tiredness isn’t fleeting like most people’s. It stays with me, and asking me to fight through it isn’t possible.” — Monica Jean Cozadd

 

What are you tired of hearing from strangers? What would you rather hear instead? Let us know in the comments below.

1k
1k
TOPICS
, Listicle
JOIN THE CONVERSATION

To My Loved Ones When I Don’t Want Your Company

13k
13k

Loving someone with a chronic illness comes with some extra challenges. Illness is unpredictable, and the important people in our lives understand this. They learn to be flexible and accommodating and we love them for it.

While it might be easy to understand why we’re not up to going out or carrying on conversations for hours at a time, it’s harder to understand why we might not want your company at all. It’s hard to understand why we might not want you to come help us around the house or give us a ride to an appointment. You’re trying to make our lives easier and we’re pushing you away. It might not make sense to you, so let’s talk about it.

Those of us with chronic illnesses are used to carrying on with life while feeling unwell. We have to, because the unwell part isn’t going anywhere.

You will see me when I don’t feel well, otherwise you would never see me. Sometimes when you see me I’ll be feeling decent enough to be cheerful and bubbly, and I’ll smile in a way that brightens up my whole face. I’ll be able to crack jokes and be engaged in conversation. Other times I’ll seem tired. I’ll still smile, but if you’re watching closely my eyes will give away my fatigue, and you might notice me sitting down or leaning against the nearest surface. And sometimes when you see me I won’t be able to fake it very well. You’ll hear me run out of air while I’m talking and our conversation might be disjointed because I’m so overwhelmed by how sick I’m feeling that I have no idea what you just said.

And for the most part, that’s the worst you’ll see me. But it doesn’t end there. You don’t see it because I don’t let you, but it gets worse.

Sometimes I’m too nauseous to sputter out more than a few words, and I sit with my trash basket in my lap because I can’t stop retching. Sometimes I’m so tired I feel like I can’t even hold my own head up. Sometimes I’m scared to stand up or move at all because my head feels so disconnected from the rest of my body that I don’t feel safe on my own two feet. And sometimes I can’t stay still, fidgeting and squirming non-stop because I just feel so sick that I cannot even handle being in my body right then. There are times when being sick is so completely consuming that it takes all of my energy to make it through the next minute, and then the next, and I just cannot focus on anything else.

You won’t see me like that because those are the times when I try to hide away from the real world, isolating myself behind a closed door while I wait it out. Very few people see me like that because I don’t want them around. I don’t even want my mother, the person I trust most in this world, to be around when I feel like that. At times it is unavoidable if I get caught off guard or if I’m too sick to deal with it myself, but I do what I can to keep that side of my illness hidden.

This might sound backwards to you. You might think that times like these are when you want people by your side the most. But no. I don’t want you to see me like that.

Part of that is for your sake. I don’t want you to feel uncomfortable. In the midst of the awfulness I will be thinking about how horrible it is that my illness is spilling over into your life. I know that seeing me so sick will make you worry and feel badly for me and I will feel the need to protect you from that. I will want to pretend that I’m OK for you, but I won’t be able to because in that moment I’m not OK. I will be OK in time, and I will be able to tell you that, but having to tell you that takes focus and energy, every ounce of which I need to just get through it.

And part of it is for my sake. Feeling so unwell to the point of just not even knowing how to handle being in your body anymore is a very personal thing. It makes you feel incredibly vulnerable. Exposed. Helpless. Raw. It feels like you are naked and people are staring at you but there is nothing around you can use to cover up. And that’s scary. Feeling that way is hard enough; knowing you can see me feeling that way is too much.

So I don’t always want your company, and at times I decline your help. I don’t always let you see my face or hear my voice, and it has nothing to do with you and everything to do with me and the way my illness sometimes consumes me. I promise I will gladly accept both your company and your help when I’m ready. I don’t need to be at my best, but I do need to not be at my worst.

There’s one last thing we should talk about. Even when I don’t want you there, it helps to know you will be there when I’m ready. And I love you for that. Thank you for being within reach.

Follow this journey on Finding My Miracle.

13k
13k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When You Think You’ll ‘Outgrow’ Your Chronic Illness

174
174

For some people, the high school experience is defined by sports games, high school boyfriends, friends and parties. Or maybe that’s just a misjudgment I’ve made based on high school movies. I still think even the snarkiest people have some faint optimism their high school lives will be like “Ferris Bueller’s Day Off” or “10 Things I Hate About You.” Heck, I wouldn’t have minded if it was “High School Musical.”

For me though, a person who’s had health issues affecting nearly every body system since I was 13, high school was defined by medical situations. It was blood tests before school and after-school doctors’ appointments. While some people missed a week of school to go away to a sports camp or a music event, I was in the hospital, catching up on work in a stiff bed and asking the night shift nurses to explain a biology concept while they did observations. When I was in classes, I struggled. Grade-wise, I was on top of the world. I could have gotten into an occupational therapy course in my country. However, it wasn’t hard to miss that I was dizzy; walking a few extra meters could mean passing out. Some days I was nauseous and didn’t eat much. One time, I remember being self-conscious to wear a bikini because of the black and purple bruise marks all over my ribs, collarbone and legs.

However, I graduated. I finished my exams. My school uniform was discarded. I was onto the next stage of life. But what is the next stage of life when you struggled through the previous one? For me, a top student and a “Type A” person, the next step was university. I packed up my suitcases, and my dad dropped me off in a place where I didn’t know anyone, at a university I didn’t know much about. However, it was the course I wanted to take.

Before I moved and before graduation, people who had known me for years asked where I would be living. I said my grandma’s house. However, when I moved out with scholarship money that could cover my rent, I decided I could be my own woman: cook my food, vacuum my carpet, sleep whenever I wanted. Hadn’t I outgrown the chronic illness thing?

In retrospect, I think the issue was that I associated being ill with a place. The concrete stairs I had fainted on at school, where they had to call an ambulance because I hit my head. How I always got dizzy on the long walk from biology to English. How every Friday I would go home on the bus, walk into my house and fall asleep, not waking up until mid-Sunday morning.

Then there were memories associated with chronic illness being a time in my life. I could mistakenly think it was something like puberty — something with an end date that I would outgrow. For example, when I got my period, I got so dizzy I almost fainted. When the first guy I really liked told me he found someone else, I was waiting to be admitted for two weeks of inpatient rehabilitation. Chronic illness, high school and growing up were all intangible concepts.

It took me a solid year to remember what chronic illness was like, and it was a year and a half before I dropped out. I tried too hard until one day, I wheeled into the student guild in a wheelchair, and my friends (who I had never mentioned health problems to) wondered where I had attained such an object. The hardest thing was realizing some of the reason I crashed was my own fault: the alcohol I drank even though I shouldn’t have, the awkward meal times with clumsily arranged food, the weird sleeping schedules. After I realized that though, I could pick myself back up. I realized I had done well managing my health as a teenager, and I could do the same as an adult.

Now, I no longer do occupational therapy but have re-enrolled in law school and am excited for what being a not-so-healthy university law student can bring.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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

174
174
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.