20 Things You Don't Have to Apologize for If You're Chronically Ill

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As someone who lives with chronic health challenges, how often do you find yourself apologizing? To friends when you have to cancel plans, to your spouse because you didn’t finish the chores you meant to do or even to yourself, for getting a life-altering diagnosis? You’re not alone if you’ve felt guilty about your body and what you aren’t able to do. But here’s the thing: Being chronically ill isn’t anything you need to apologize for. You haven’t done anything wrong, and you’re doing your best to cope.

Yes, eliminating guilt from your thoughts is easier said than done. So we asked our Mighty readers with chronic illness to share the things others in the community should never feel like they need to apologize for. The next time you find yourself feeling guilty about any of these things, think of this list as permission to go easy on yourself.

Here’s what the community told us:

1. “Taking an off day. Not being ‘productive.’ Especially in the USA it’s drilled in you’re head you’re worthless if you’re not working AKA producing things. Your worth isn’t dictated by how much you work. You’re​ wonderful the way you are. So take care of yourself. Even if it means working part time, or not at all. Or staying in bed all day.”

2.For not being able to do what other people their age/gender/social status can do. And for not being able to do what ‘so and so’ with the same disease can do. It is OK to have different abilities, different strengths and different weaknesses.”

3. “On the days one feels good and has some extra energy, doing something that is enjoyable as opposed to catching up on the housework… These days are few and far between and I spent so much time and energy doing laundry, grocery shopping and taking care of everyone else that there was no time left for me to do anything that would make me happy… after all, I wouldn’t want to have to explain to others why I went and sat on the beach reading a book while the laundry was piling up!”

4. “Needing to rest. We are pressured not to rest from nearly every direction in our lives and it’s one of the most important things for us to do!”

5. “Crying out of frustration… sometimes (actually all of the time) chronic illness is too much to handle, and it’s better to just let your emotions out instead of bottling them up.”

6. “Canceling plans last minute and disappointing friends/family all because when you made the plans you were having a ‘good day’ which unfortunately didn’t last. I never know how I’m going to be from one day to the next but I always feel guilty when I simply can’t or don’t want to go.”

7. “Taking self-care time. It is crucial to our well-being that we allow ourselves time to invest in things that bring us joy or to relax and rest.”

8. “I won’t apologize for doing the best I can. Some moments I feel invincible. Some moments I feel powerless. I live moment-by-moment and can only judge what I can or can’t do in that moment. I can’t apologize for something I have no control over.”

9. “Having a bad day. It’s not something that can be helped, and you are not lazy just because it was a day when your illness cropped up and made it so you aren’t able to do anything. It’s not ‘lazy’ to take care of yourself. I know I can’t function when I have a migraine, or when my depression acts up. Sometimes the best thing I can do for myself is take the time to feel better.”

10. “For feeling hopeless or negative about the future… I can’t stay positive and hopeful, especially when the pain is at its worst. There are days when I am going to break down and feel like I can’t go on; please don’t get mad or try to silence me because you don’t like what I am saying because it makes you uncomfortable or try to fix things because you can’t fix this. Just listen and be my shoulder to cry on.”

11. “For being sick! We didn’t choose our illnesses, we can’t cure them, we can only live with it. I hate having limitations because of my illnesses, but they are there and trying to push myself beyond my limits doesn’t do anyone any favors!”

12. “Talking and posting about their illnesses. Those who aren’t affected day in and day out by chronic illness do not realize how it affects everyday life. Not only that, there are over 7,000 rare diseases that not even trained professionals have heard of. It is essential that we put a face on chronic illness and give it a voice, and the easiest way to do that is humanize it by sharing your struggles. When you share your story, you are subconsciously are showing those struggling that they are not alone, and you are also giving others permission to do the same.”

13. “For not getting all the housework done some days. This is my biggest issue because I hate resting and even when I feel bad I’m still trying to do housework when I really should be resting. It’s a mental fight daily between what my body wants to do and what my mind.”

14. “People with chronic illness and/or mental illness shouldn’t feel guilty about taking their meds. Medicine is there for a reason and many of us need it to survive. People with a mild headache take aspirin without any guilt, why should we feel guilty about taking our own meds?”

15. “Speaking up when someone’s comments or questions are making you uncomfortable. Also if you do not want to talk about your disability at all that’s completely OK. If you are going to someone’s house or somewhere new you shouldn’t be afraid to voice your concerns.”

16. “Not doing hair and makeup. My skin hates everything. I look very different without make up. People think I am dying when I don’t wear makeup. I work very part time and when I don’t where makeup my boss wants me to work less because I look so different.”

17. “For wracking up debt and hospitals bills and continuing to seek an answer. ‘I’m sorry hunny, no, I didn’t get any answers this time either.'”

18. “Having to park in a [disabled] spot. I have postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia and I recently got a handicapped parking sticker. I have used it all of three times and gotten looks two of those times. Why? I don’t look sick. It’s an invisible illness so sure, I may look normal but little do they know, inside my heart is racing, legs are weak, out of breath, maybe light-headed, dizzy, hot, etc. I shouldn’t have to explain myself to the people who want to judge me just by looking at me.”

19. “Not being able to do the things I once could, even a year ago, without lots of breaks. Not being the same person, I feel like I’m constantly changing due to my illness and trying to get the old me back.”

20. “Allowing people to see them unwell. And how those people react to our realities. That should be a guilt free venture. Allowing them to see our truth so they can better understand us, but almost all of us feel some kind of guilt or shame in our own realities, despite not having caused it.”

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London Underground Sign at Kilburn Station Explains Invisible Illness to Passengers

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For people living with an invisible illness, communicating that you to need to sit on a crowded public train or bus can be difficult if you look perfectly healthy. Fortunately, a sign posted in the Kilburn Station of the London Underground explains what passengers may be missing when a seemingly healthy looking person asks them for their seat.

The sign reads:

Please offer me a seat.

Our baby on board wearers all like to rest,

The old and less abled are put to the test,

But it isn’t just them, there are many cases,

Different people, different races,

Moving in pain and wearing a frown,

It might help them out greatly by just sitting sitting down,

But why would you want to give up your seat,

To someone who looks quite well and complete,

Some people have issues you just cannot see,

So don’t make them ask and don’t make them plea,

Please make an effort and please be aware,

Show them respect and show them you care,

Stand up and be counted, you’ll do a good deed,

Give up your seat to someone in need.

Transport for London (TfL), London’s department of transportation, has been trying to make public transportation more accessible for those with invisible conditions. This past September, TFL introduced a badge trial program for people with invisible disabilities.

“We appreciate that asking for a seat on public transport can sometimes be difficult, particularly for customers who have hidden disabilities or conditions. That is why we are launching this trial,” Mike Brown, London’s Transport Commissioner, said in a statement published by the TfL.

The badge, which reads “Please Offer Me a Seat,” was initially offered to 1,000 London travelers. An expanded program will be launched this spring.

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What a 'Good Day' Looks Like for People With Chronic Illnesses

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When you live with chronic health challenges, your definition of a “good day” might be different than what a healthy person considers to be a “good day.” For you, things others take for granted may hold more significance — having less pain than usual, being able to go the whole day without a nap, or having the energy to play with your kids.

With more understanding of what your “good day” looks like (and thus, the difficulties you face on your bad days), hopefully the healthy people in your life can better support you on both the good and bad days. So we asked our Mighty community to share what the “good days” of their illness look like. Let’s raise awareness of what the ups (and downs) of chronic illness really look like.

Here’s what our community told us:

1. “Waking up in the morning without feeling overly tired and making it through the whole day without feeling exhausted or needing a nap. Having energy for cleaning, cooking and spending time with my family. It’s rare that I have energy for all the have to’s and want to’s.”

2.A good day is when I can do household chores without every moment being miserable. It’s having the energy to stand and walk around and the mental clarity to organize, and a settled stomach that doesn’t constantly make me feel nauseous and pained. A good day is when I can smile and really feel it, not just grin for the benefit of those around me…”

3. “Being able to get out of bed, go to work, make dinner, clean the house and take a shower all in one day. A good day for me is a normal day for most.”

4.I can actually get out of the house for several hours and do something! Sometimes I go to church, sometimes I go shopping, sometimes I go to Disney World. I’d love to have multiple good days in a week so I can work!”

5. “Being able to complete a full day of school with minimal pain. Not feeling overly sick when eating, able to concentrate and make it through the day without taking a nap.”

6. “A good day is not feeling pain when I eat. Being able to enjoy my meals instead of running to the restroom. A good day is having enough strength to carry my 4-year-old because she fell asleep in my arms. A good day is being able to make it through work, cook dinner, clean up, and give baths. Most days there’s a glitch in everything I’m trying/needing to do.”

7. “A good day consists of pain and exhaustion. It really does. A good day just mean that perhaps I’m experiencing less of one or the other, or if I’m lucky both. Or it just means I have more strength to push through and get stuff done.”

8. “Getting to see the sunset. The majestic, vibrant colors of the sky. It’s more than beautiful — ethereal, magnificent, enchanting, captivating, enlivening and magical. It’s one of my favorite things, something to look forward to as each difficult day draws to a close. A moment of quiet, knowing no matter what I may have faced in the hours that preceded, I made it through.”

9. “A good day would be a day when I’m able to do things others take for granted without any pain or exhaustion. To be able to just get out of bed and not have to give my body 45 minutes to adjust before even attempting it. To be able to shower without fatigue. To get through the work day without grimacing from pain or needing to rest throughout or to pop pain killers.”

10. “A good day for me is a day I can take a shower. Some days I go two or three days and get to where I feel so gross but need help to shower. If I can shower on my own it’s a good day.”

11. “Single digit dislocations, no passing out, minimal blackouts, only faint abdominal pain and nausea, if I’m really lucky no headache, body temperature stays relatively normal, few tremors, anxiety mostly absent, and able to pull off the “normal teen” routine and enjoy myself.”

12.A good day is when I manage to do one productive activity, one self-care activity and keep to a normal hygiene routine! If I did these things and still had the ability to do more, then, it would be more than a good day! It would be a flying pigs kind of day!”

13. “A good day is waking up and being unaware of my kidneys. Other people take for granted that they have kidneys without being conscious of their position, speed, relationship between function/pain/and humidity. On good days I get to be an unaware kidney person.”

14. “A good day is where I actually put on jeans and a bra when I leave the house instead of just my ‘going out’ yoga pants and ‘going out’ T-shirt (the one with thick screen-printing on the front so I don’t have to wear a bra). Jeans and bra. Good day.”

15. “Like Christmas… Remember when you were a little kid and how excited you would get on Christmas morning when you saw santa left a pile of presents for you. That’s what a good day is like for me. And I make full use of it… so I go out and have fun with my fiancé.”

16. “A good day means I get to move into the living room when the kids get home from school and spend the evening with the family instead of in my room in bed. A really good day means I might get to go see a movie or go grocery shopping, I have to choose.”

17. “Being able to play with my dog. Giving her a good run around outside or inside and laughing at her goofiness. Sitting on the grass with her in the sun, with minimal back and abdomen pain and seeing how happy it makes her to have mum all to herself.”

18. “A good day for me is when I can breathe normally, without feeling the invisible weight on my chest. When I can just step out and do things on my own without feeling disoriented.”

19. “A good day is when I can accept my limitations, not push myself over the limit and not feel guilty for being me, and being constantly exhausted or in pain.”

20. “A good day for me is when my 1-year-old grandson visits. When he is around it allows me to ‘forget’ for awhile how ill I am and focus on the joy he brings me. He takes the pain away if not for a little while. His visits work better than all my meds.”

21. “A good day looks like having my pain being manageable enough to cook a meal for myself, and not leave places early to go home and rest… It looks like having the energy to reach out to friends and hold a conversation for more than five minutes. It looks almost normal to those who don’t know me personally.”

What does a “good day” look like for you? Share in the comments below.

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To My Mom, From Your Chronically Ill Daughter

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To my mom:

Thank you for sitting with me in the hospital those first two weeks, when we had no idea what was going on and I was in a daze from pain medications but you had nothing to numb your fear or lack of knowledge. Regardless, you put on a strong face. You bought me a stuffed animal. You brought flowers to my room every day.

Thank you for doing endless research on my disease, looking up clinics, treatments, supplements – more than any doctor ever has, and more than any doctor ever will. You are my primary care physician.

Thank you for listening to me and allowing me to be more emotionally vulnerable with you than any therapist or psychiatrist ever could allow me to be. I feel safe with you, even when I am angry at you.

Thank you for sitting through the storms that my illness has caused me: the anger, the confusion, the grief, the denial raging through my body. I took a lot out on you. And still, you gave nothing back but love.

Thank you for trying to understand the pain that only I will truly understand. Instead of ridiculing me or brushing me aside, you listen, you listen, you listen. And you only give love back.

Thank you for putting your emotional needs aside at times when mine seemed to spill over the top. I know you have sacrificed so much; that is what mothers do. But I know you go through pain seeing an ill child struggle – thank you for comforting me even when you must be feeling intense sadness at times.

Thank you for telling me – when I told you I was ready to give up, ready to end it all – that you would not be able to continue without me. I felt your love more keenly than I ever have at that moment. It made me feel relevant, human – more than just a body on an exam or operating table.

Thank you for sitting with me through countless infusions and holding my hand when I get IVs – even now that I’m an “IV pro” and don’t need comfort. You want to help. I know that, and I appreciate it endlessly.

Thank you for continuing to have hope that I will feel better one day, even though I myself have lost that hope. You never cease to tell me that you believe that something will work. Something will be good for me. I have good things ahead, and that is one of the reasons I am still here.

Thank you for this text you sent me last week:

I spend a lot of time thinking about how much I love you. So many things have changed, but even now I see in you the determined little soul born almost 20 years ago.

You are the reason I am still here, still existing, still trying. You have always been the most important person in my life, but my illness solidified that. My diagnosis and the treatments, procedures and infusions to follow made our relationship more personal, more raw. And for that, I am grateful. I love you. Thank you.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Jupiterimages.

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The Deeper Meaning Behind 'I'm Just Tired'

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“I’m just tired.”

Do those words sound familiar?

Those three words are my answer for literally everything related to my illnesses.

But there is so much meaning behind those words. “I’m just tired” barely scrapes the surface of what I am trying to convey.

What I really mean when I say “I’m just tired” is not that I even am tired – rather, I am downright exhausted. But even if I were to say “I’m just exhausted,” that still does not accurately depict what I mean. You see, I have come to find out that describing chronic illness is difficult; one cannot easily put into words the extent to which they are fatigued or the number that their symptoms may do on their body. It is not always easy to explain why we feel this way or why our symptoms are flaring. We do not even know why/how we developed our chronic conditions 95 percent of the time. There is a lot of unknown, uncertainty and invisible pain that accompanies living with chronic illness. So to say, “I’m just tired” and mean just that…how true can those words really be?

And yet I speak those words all of the time. And as I was driving today I was reflecting on why that is. Why do I always tell people when they ask that I am “just tired?” I couldn’t figure this out for the longest time…but the more I thought about it today, the more I realized that I do it simply because it’s easier. So yes, I am taking the easy way out. And this answer is easy for many reasons.

First, I am already drained of energy. So to go into detail about how I am actually feeling and why I am feeling that way…well, it uses up even more of the little energy I have. If I tell my family and friends I am “just tired,” they typically will not push the issue or ask any more questions. Sometimes I might get a “Well, you should take a nap” or “Go to bed early,” but that’s about the only responses that come my way.

Second, I do not like to show anyone that I am not doing well or not feeling well. I like to portray that I am strong, and to let others know how I truly feel and what is actually going on… Well, it makes me feel weak and vulnerable, even though I know logically it really does not mean that. I am not one to discuss my illnesses in great detail, and if I am honest about how I truly feel, I fear that I might be seen as a “complainer” or that I am just “looking for attention.”

So I have plenty of reasons for always resorting to leave it at “I’m just tired,” but sometimes I wish that people knew what “I’m just tired” really meant – without me explaining it. Maybe that is too much to ask. None of us are mind-readers. I cannot expect people to know what I really mean when I make such a general or vague statement. It is not fair to get angry or frustrated with people when they can’t see beyond those three words. I may not always have the energy or courage to speak up and reveal how I truly feel inside in that moment, but I have the courage to do so now.

“I’m just tired” means that my legs ache and feel as though they could break underneath me, and it means wondering how on earth these same legs carried me from point A to point B. It means bursting into tears out of sheer exhaustion and falling on my bed the minute I arrive home. It means feeling dizzy and weak as though I could pass out from just standing too long. It means not being able to think clearly and forgetting simple things because I used up all of my energy on daily tasks. It means feeling as if my body is being weighed down by a ton of bricks. It is feeling like I could collapse when I am already lying in bed. It is not being able to wake up in the morning because I am just so darn exhausted.

All of this is what “I’m just tired” really means. Those words represent something much heavier and complicated than one might think. I would be lying if I said I didn’t wish people would realize what I mean when I speak those words. I wish people understood my illnesses and could feel what I feel so they know just how hard it can be to live with an illness that is invisible on the surface. No, some people will probably never fully understand or even comprehend how or why I feel so terrible sometimes. But does that mean I shouldn’t speak my mind and heart? Is it better to keep quiet and continue plugging along the best way I know how? Or should I try to explain to people what I really mean? I still am not sure what the answer is.

What I do know, however, is that it can be very difficult for those with chronic illnesses to sort through their feelings. It is not easy to deal with an illness that has no rhyme or reason. I think it is important for our loved ones to realize that sometimes we are just as confused as they are! So to have that understanding from family and friends that “I’m just tired” means something much deeper, could be a weight lifted from our already heavy shoulders.

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Thinkstock photo via Marjan_Apostolovic.

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I Had to Choose My Health Over My Dream, and That's OK

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Since May I had been employed by Kings College Hospital as a Healthcare Support Worker. I was in my element and I loved it so much. I worked in the Fertility and Fetal medicine units and I adored every second I spent with each and every patient and my whole team. Everyday I would get up at 5:00 a.m., take a two-hour commute to the hospital, get into my uniform or get scrubbed into theater and work my bum off until 5:00 p.m. when my shift ended. It was hard, it was tiring, it was draining but it was fantastic. After around three weeks in the unit I could recall the protocols of each treatment cycle and identify everything on a scan picture. I found the place where I integrated so well and made so many friends. It was my dream and the step up to my career path.

But unfortunately, as I suppose you guessed, it couldn’t last. I started getting too drained and getting fibro flares more often. Not only that, but I started to show other signs of further issues. I couldn’t hack it. Doctor’s orders made me hand in my notice and leave as I was “unfit to work.” My unit and my team were so understanding (I suppose they had to be, we’re in the caring profession). They gave me a fantastic send-off full of presents and cake and as much as I was devastated that I wouldn’t be there anymore, I knew it was for the best.

At nearly 20 years of age, most people have their lives relatively on track. For me, that’s quite clearly not the case. I know what I want. I have aspirations and dreams that I thought I was on track to achieving. I wasn’t prepared for the realization that my goals were once again having to be put on hold for my health and my sanity.

My first instinct when I realized that I had to leave was to feel guilty. I kept thinking about how I wouldn’t be able to pay rent to my mum, I wouldn’t be able to save for a mortgage, I wouldn’t be able to take my boyfriend out, I wouldn’t be able to treat my little brother and I wouldn’t be able to be independent. I didn’t and still don’t want to be dependent on anyone, so all I felt was concentrated guilt. I went to my mum and boyfriend for advice and mostly approval on the situations. Luckily for me, they wanted what was best for me and knew that sticking it out for even longer would only be a detriment to me.

I knew deep down that the decision was for the best, as otherwise I would have worked my way into a hospital bed, but it didn’t make the transition any easier on me. I knew that my body was thankful for not being overworked and underpaid but I couldn’t help thinking that I was wrong for doing it. As much as I enjoy sitting and reading in my pajamas, I’m just not one of those people who can do nothing all day. I need routine. I have to feel useful and I have to feel like I’m earning whatever I get. Being out of work for the next couple of months is going to be very difficult but I know it will be better in the long run. Not only that, I don’t really have a choice.

I still find it hard to believe that this is the harsh reality. Even though you think you may be set on a path to something better, it is very likely that there will be hurdles and you will be knocked down along the way, but it’s OK.

You are not giving up but letting go for a little while. It’s not defeat but bravery to make the choice that is right for you. It doesn’t matter what your friends or family may think is right or wrong – the choice can only ever be made by the individual who’s living it. No matter what it is, your decision is valid and your decision is correct.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via RossHelen.

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