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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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17 Texts People With Chronic Illnesses Would Love to Get After Canceling Plans

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Nobody likes to have to cancel plans, but for many people who live with chronic illnesses, it’s a regular part of life. Having an unpredictable condition means you can’t always make it out of the house, even when you want to. Some friends get it and will always be happy to reschedule, but unfortunately not everyone understands.

We asked our readers to tell us some texts they’d love to get, instead of silence or frustrated replies, when they have to cancel plans due to illness. If you’re ever unsure how to respond to your friend’s last-minute cancellation, we hope one of these sparks an idea.

This is what they had to say: 

1.

I'm not feeling well. Going to have to cancel tonight. I'm coming over and bringing take out and bad movies. Do you need me to bring anything else? Chocolate maybe?
If You’re Flappy And You Know It Facebook page

2.

I'm sorry but I won't be able to make make it tonight. I totally understand. Your health is so important. I will check in with you later to see how you're feeling.
Christianne McCall

3.

I'm not feeling well and I have to cancel our plans. No problem! I'll be around shortly to make sure you have all you need. Can I pick anything up for you?
Tracie McIntosh

4. 

I know we made plans today but I'm just not up to it anymore. Sorry. I'm coming over to take your kids for a few hours while you take a nap.
Crystal Parsons-Bateman

5.

I'm having one of my bad days. I have to cancel on our plans. I'm sorry today is difficult. I'm coming over with soup and a movie. I'm taking your dog for a walk. I love you and I'm only a text away.
Maria Thomas

6.

I'm not going to be able to make it tonight after all. Tell everyone I'm sorry. No worries, but we're going to miss you. Just take care of yourself and let us know if we can we do anything.
Alyssa Milletti

7. 

I have to bail on our plans because I'm not feeling well. I know you wanted to keep our plans and that you aren't flaking out. I know that you're probably hurting emotionally and physically right now. Please know that I'll always be your friend, even when you need your space.
Mandy Malloy

8. 

I don't think I'll be able to come tonight. I'm just not up to it. That's OK. Are you up for a visit and maybe some really good [insert dessert of choice here]? I'll even sweeten the deal and do your laundry while we hang out.
Karen Lyons

9.

I'm so sorry to cancel last minute, but I'm not feeling well. I am your friend in health or sickness, sadness or joy, wealth or poorness. Tell me if you need anything, and if you don't, I'll be right here loving you. Always.
Fabiana Fabis

10.

I can't make it tonight. I feel so bad for bailing. Don't ever feel guilty for canceling or saying, 'no.' Only you know how much you can handle. I'd rather you miss this if it means you might start feeling better.
Pamela Jessen

11.

Really not feeling well right now. Sorry but have to cancel our plans. It's not your fault. No need to apologize. let me know when you're feeling up to it and we can do something then.
Monica Jean Cozadd

12.

I just can't bring myself to join you tonight. I know you would be here if you could. I'll be sure to invite you next time.
Tina Dawn Leon

13.

I have to cancel our plans. I'm staying in bed today. Do you want me to drop you off some Starbucks on my way out to do errands?
Alisha Haskett

14.

I wanted to see you but I'm just not up to going out today. I will be over later. You don't need to clean or cook. I want to visit you, not your house. I just want to spend time with you and love you.
Tristen Wuori

15.

I can't make dinner. I have to stay in tonight. I'm not feeling well. I'm putting on my pajamas and heading over with pizza. If all you can do is nap, then I will nap with you like little kids again.
Jaclyn Kulfan

16.

I have to cancel our plans. I'm having one of the bad days. What can I do for you?
Colette Manley

17. 

 

 

I won't be able to make it. Sorry to have to cancel. It's all right. Tell you what, when you're feeling up to it, I will drop my plans, and we'll do something together, even if it's just a quick lunch or coffee.
Victoria Shepard Hollingsworth

 17 Texts People With Chronic Illnesses Would Love to Get After Canceling Plans

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To Those Who Judge Parents for Wearing Pajamas to Their Kids’ School

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There has been a huge uproar in the news recently about parents wearing pajamas to school. To be honest, the first thought when I read this was, “I’ve done this.” I read the article, and to sum it up in short, the head of Skerne Park academy in Darlington wrote a letter to parents asking them not to wear pajamas while dropping children off at school. The letter stated, “It is important for us all to set our children a good example about what is acceptable and appropriate in all aspects of life, not only from the point of view of their safety and general well-being but also as preparation for their own adult life.”

Following this article, there has been a lot of social media and online chat. I’ve read of parents standing in defiance, stating no one should be telling them what they can and can’t wear in the day. I’ve heard parents who are supportive of the head teacher, and I’ve also heard some judgmental assumptions, comments and opinions.

For example,”People who wear pajamas are just plain lazy.” “If you wear pajamas to school, you’re not fit for society.” “There is absolutely no excuse, it is pure laziness.” “It only takes two minutes to get dressed.” “Children should be brought up knowing it is wrong to sit in pajamas all day.” “People who wear pajamas have no respect for themselves.”

Now I would like to have my say on the matter. While some parents may appear “lazy” and “disrespectful” by wearing PJs to school, this is actually a major assumption and a massive generalization, and in my opinion an unfair and biased statement.

I am very unwell. I have a number of health conditions that are not physically visible. In fact, I classify myself as someone who has an invisible illness. Some days I can barely walk; I wear pajamas in the home most of the time. Everything I do demands so much of my energy, and most days I choose to stay in pajamas to be comfortable and reserve energy for more essential tasks, like meeting my child’s needs or attending an appointment. For me, as a mother, my number one priority is my daughter.

On a school morning, I focus on getting my child ready for school, making sure she is fed and dressed, having her hair done, brushing her teeth and getting to school on time. These morning tasks are physically exhausting for someone with chronic fatigue. I currently don’t take my child to school, as I’m simply not well enough, but on occasions, I have attended school in PJ bottoms and a top, usually covered by a jumper.

Since I’m not the only mother or parent in the UK with chronic illnesses or conditions that exhaust me, I imagine other parents may be faced with similar daily choices to get their child to school with little or no energy, and they wear PJs or to get changed and burn themselves out before getting through the front door. I do have self-respect. I am not putting my child’s health and safety at risk by wearing my pajamas.

While some people may be healthy enough to get changed, they may struggle in the mornings to get their child to school dressed, fed and on time. Does this mean every parent who struggles for whatever reason is a disrespectful and lazy? No!

We do not know every parent’s situation. We don’t know what others are going through mentally, emotionally or physically, and quite frankly, I find it rude and ignorant to label all parents who choose to wear pajamas to school lazy and not fit for society. I am a good mother, a fabulous parent ,and the fact that I may wear a set of pajamas to school at times does not determine who I am or what kind of person I am. I would gladly dress myself up and wear makeup and look amazing while dropping my child off, but I have to be real and do what I can to reserve my energy as a mother with chronic illness.

Now that this issue has been discussed across the country, I am concerned other parents who may struggle with poor energy levels may now be stereotyped. There is so much more consider than looking at someone and judging them by their appearance, and I feel this happens far too often in our society. As a qualified teacher, I have to disagree that wearing PJs to drop off a child at school will greatly hinder a child’s ability to succeed in life. This is a load of rubbish.

Naturally, a parent about to go to work will be dressed for work when they take their child to school. But there are stay-at-home parents and chronically unwell parents who are spending a day at home and who may for their own reasons choose to go to school in PJs. While I do agree looking your best is important, this is not always the number one priority for parents, and I think parents should not be judged unless people know the full facts.

It would be nice to live in a world where people were accepting of other’s differences, including chronic illness, chronic fatigue or simply the right to have a pajama day once in a while. Chronically unwell parents should not be judged just because they wear pajamas on a school run, and neither should any other parent. There needs to be more understanding and less judging.

Follow this journey at Daysinbed.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

Lead photo source: Thinkstock Images

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What I Wish People Knew About My Illness, Even When I Look Fine

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Side-by-side photos of the author: smiling in one, lying in a hospital bed and giving the thumbs-up in the other

I haven’t quite decided what I think is worse: living with a chronic illness or living with an invisible chronic illness. I’ve come to find people don’t realize it’s offensive, not a compliment, to say, “But you don’t look sick!” Let me tell you something: Looking healthy doesn’t make this any easier. It makes it even harder. It means having to explain in detail why you have to miss class or work. Being registered with disability services is not enough; a quizzical stare is enough to make me start panicking and rattling off information about what I’m dealing with — which, quite frankly, no one should have to do.

What I wish people understood is being ill does not get easier with time. It gets harder. Your body gets broken down. And then your mental state goes, too. Sure, you may adjust to the physical pain, but you never truly adjust to the sense of panic that sets in — the constant state of anxiety you’re in, waiting for your body to fail you once again. You never get used to feeling like a burden, feeling embarrassed. You never get used to those around you saying, “Again?! Weren’t you just in the hospital?” Yes. Yes, I was. Thank you for the lovely reminder!

The absolute worst part, though? The feeling of isolation. I don’t just mean at 3 a.m. when you’re alone in your hospital bed, listening to the steady drip of the IV. I mean the embarrassing feeling of having to explain that you’re sick, again. Or learning it’s not worth it to tell people; it’s easier to just deal with it on your own. You fear breaking down again. Everyone tells you to be strong, to take better care of yourself. They assume if you get sick fairly regularly then you should handle it better every time. I sure as hell don’t.

Every time I get sick, I launch myself back into thinking of the amazing job opportunities I’ve lost out on. The amount of class time I’ve lost out on. The nights with friends I’ve lost out on. The friends I’ve lost in general. You eventually get to a point where you learn to cut out the people who expect you to adjust to pain. Your soul will never adjust to this level of pain. So you ask for something for the pain. Except it turns out there is nothing that will numb your feelings.

For anyone who is feeling or has ever felt this way, I believe the sooner you accept there is nothing that will fully take away the pain, that your illness is here to stay — that, like it or not, you will never “get used to it” — the sooner you will begin to take care of yourself. There is nothing wrong with allowing yourself to feel this pain every once in a while. There is nothing wrong with going through therapy. There is nothing wrong with allowing it to feel real. For me, removing the sense of guilt I get for feeling so down — when I know there are so many people who are far sicker than me, who are probably handling it much better in this moment — is really difficult. But I have learned to understand that “pain” is subjective and arbitrary. It is also not a competition. It is OK to feel.

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

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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.

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