15 secrets of people who can't work because of an illness

15 Secrets of People Who Can't Work Because of an Illness

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If you have a chronic illness, you may know what it feels like to be a “full-time patient.” Between the physical and emotional symptoms, constant doctor appointments and numerous tests and procedures (not to mention keeping track of it all), being chronically sick can become a full-time job in itself. You may find yourself needing to cut back on hours or stop working altogether due to the demands of your condition.

Although this may be a necessity for your health, other people don’t always understand why you’re not working. They may have misconceptions that you’re “lazy,” “on vacation” or “so lucky!” but as those of you with chronic illness know, this couldn’t be further from the truth. By hearing what it’s really like to be a full-time patient instead of a full-time employee, hopefully others can begin to be more understanding and less judgmental. So we asked our community to tell us the secrets most people don’t know about not working due to illness.

Here’s what our community told us:

1. “I’d much rather be at work. People look surprised when I tell them that, like I’m on some luxury vacation and they can’t understand why I would ‘choose reality’ over said vacation. They have no idea that I’m home because it’s physically too much for me to be anywhere else. So yes, I’d rather be at work because being at work means I’m healthy again.”

2. “Enjoying the good days can make you feel really guilty. As though the energy and rare moment of being functional should be used to do something ‘productive’ rather than doing something fun. Logically I know that one good day doesn’t mean I have to ability to hold a job, but mentally I feel like I haven’t ‘earned’ the right to do the fun stuff.”

3. “It’s not ‘fun’ and I don’t have ‘a multitude of free time.’ All my time is spent being sick while trying to perform the most basic of daily activities. I wish I had the luxury of being ‘lazy.'”

4. “‘Work’ is a loaded term. The bigger picture: Working outside or inside the home for yourself or someone else, including housework/yardwork, etc… In my case, my full-time job is taking care of myself and medical needs, aside from low-key housework and the occasional low-key yardwork. Also, we don’t get ‘time off,’ a ‘break,’ or ‘vacation’ from our illnesses, and subsequent appointments.”

5. “I wish people knew how much I miss my job. I stayed far longer than I should have and probably did more damage to my body than I needed to, because it was such an important part of my life. I lost 95 percent of my social life when I left — being single and at home all day every day is incredibly isolating, not to mention how guilty you feel not doing your part. Every day I hope that I’ll be able to work again someday soon — there are only so many episodes of ‘Law and Order: SVU’ a person can watch.”

6. “It wasn’t a party. Contrary to what some may think, surviving being in that much pain was indeed a whole lot of work – even if the reward was not monetary. Someone made the mistake of using the word ‘lazy’ to me and my husband made damn well sure to explain exactly how wrong that was.”

7. “Disability is a full-time job. I’m a professional patient. I fill out paperwork constantly. I have to prove that my chronic degenerative disease hasn’t suddenly gotten better. And my income is less than half what I was making but my expenses are the same, higher if you figure in all the healthcare copays and expenses. And no, I can’t walk your dog, watch your kid, go out shopping. Some days I’m barely managing to shower and if by chance I’m having a good day I have my own dog, a backload of housework and grocery shopping as priorities.”

8. “I think many people see me and because I wear makeup and fix my hair, I don’t look disabled or ill. They don’t see me on the days I can’t get out of bed. The days I need help to take a shower or dress myself. I try to be positive even when I’m in pain. I have a disease that gives me vertigo and left me deaf in one ear, partially deaf in the other. I have had spine issues. People don’t see me vomiting into a waste basket while sitting on the toilet… I suppose I’d tell others that many disabilities are hidden.”

9. “Trust me, I would love to hold down a regular job. I would love to be able to use the degree I will be in debt for the rest of my life for. I would like to get to the end and feel like I accomplished something rather than live day to day.”

10. “You can have a debilitating illness and be legitimately medically disabled and still denied disability benefits by the government. You can be homeless due to your disability preventing you from working and they often still deny you (thankfully I am not homeless due to supportive family, but my lawyer’s office works on cases like this).”

11. “No one realizes that a job does more for you than just pay your bills. It is part of what gives you self-esteem. When you can’t work anymore, it is very hard to see yourself as worth something to people. You feel isolated because everyone is so busy with their lives they don’t have time to come and see you. They can meet other friends out, but you can’t do that. If you do go out, you pay for it later. It’s as hard mentally as it is physically.”

12. “I’m bored out of my absolute mind. I loved working and until my health got really bad, my job actually took my mind off it for the most part. Having nothing to do all day now drives me absolutely crazy. I hate doing nothing but my body is rarely up for much else.”

13. “The guilt I feel all the time. I feel like I’m not contributing financially to my marriage and our family. My husband reminds me that he would rather have me around than have me try to work a lot and wind up in the hospital. It’s not even like I end up doing all the housework when I’m home all day. Sometimes getting one thing done is a monumental achievement. And being home all the time can be really lonely. If I had the energy and the physical stamina to be out and work, everyday life would be more fun.”

14. “The isolation from limited human interaction is heartbreaking. I feel like an expert level clinger when my husband comes home from work or I finally see a friend. The desperation is soul crushing. I honestly would work telemarketing just to be able to talk to people if I could consistently work up the energy. To be a people pleaser devoid of peers? It strips you of your personal identity.”

15. “When I cannot work I cannot just decide that I can return. I have to wait until the symptoms subside enough to allow me to perform basic work functions. No amount of positive thinking or appearing to do better will make me functional in a way that it is beneficial to those paying me. I’m doing better now and still cannot work full time or on a regular schedule. It is outside of my control. It’s not OK and yet I have to accept it. I’m lucky to have a flexible schedule and work from home.”

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The Importance of Processing the Emotions Caused by Illness

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Feelings. So many feelings. I am certain there are emotions building up within me because I feel something: I’m just not sure what I’m feeling. I don’t know if I’m angry or sad or any of the other emotions I can’t put a name to.

I have been dealing with my chronic disorders for 13 years, so it’s something I’m well-accustomed to. I’ve managed to accept it as my “new” normal, so generally I’m relatively unfazed by it. Unfazed, in this case, meaning I don’t get too emotional when I have flare-ups or when I remember how much my diseases have taken from me. I don’t know if I’d disconnected from my feelings or if I’d just stopped feeling anything in relation to my condition.

However, recently I’ve been through a patch I have struggled to understand. I’m at a point wherein I am suddenly angry and frustrated and disappointed all the time. I can’t think about anything else. I don’t even know all the emotions I’m feeling. I know why I’m feeling what I am: it’s been set off by a particularly difficult medical patch. The sudden influx of overwhelming emotions has suddenly left me feeling lost and confused.

Am I wrong to be feeling what I am? What changed? How do I deal with emotions that I’ve never had to process before? Where do I begin to break down what I’m feeling?

While life may seem easier when emotions are left out of the mix, they’re not something we can avoid forever. They will catch up with us, no matter how OK we think we are. It’s not a bad thing. Emotions can be scary, but only if we choose to run from them. They need to be embraced and dealt with. It’s time to start facing the monsters in your closet.

Processing emotions is simple in theory, but much harder in practice. It’s also something that gets easier with practice. Oscar Wilde wrote in “The Picture of Dorian Gray,” “I don’t want to be at the mercy of my emotions. I want to use them, to enjoy them, and to dominate them.” We need to learn how not to be at the mercy of our emotions. We need to get better at identifying emotions. Perhaps if I knew how to untangle the mess I’m feeling, I’d know where to start in deciphering it. But identifying emotions alone isn’t enough. We need to take it a step further. We need to process them. Everyone does this in their own way: it may be through talking about it or writing about it or any other form of release. Regardless, they need to be processed. It must be understood. Why are we feeling that emotion? Is there something we can do to ease the cause? If not, what do we do about it?

I don’t think anyone has really discovered the secret to mastering emotions, but there are certainly lots of people who have tried. There are certainly many people who have lots of experience in helping others deal with their emotions. Spend some time tackling your emotions. It will make your life a lot easier.

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Thinkstock photo via Delpixart.

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Dear Illness: Here's a Reminder of 4 Things You Cannot Steal From Me

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Dear illness,

You have taken a lot from me. You have shaken and tested me. You have inflicted so much pain, loss and grief. You have challenged the foundations on which I built my identity, my relationships, my future and present.

This letter however, is not about the loss you have brought, nor the pain you have inflicted. I certainly don’t wish to give you that kind of satisfaction. No. I am here to remind you what you cannot take, what is rightfully not and shall never be yours to touch – the elements of my life
which will not be shaken.

Illness. You bring the crash of the waves and the brunt of the storm. You bring the diagnoses and symptoms. You influence my emotions and have triggered my questions and doubts. Perhaps you seek to drown me in the sea of them, overwhelm me with their intensity and poison me with the taste of their bitterness. Your insidious nature lurks under that label of “chronic”. I know you love that label. It strikes fear into the heart of the inflicted. Fear of the unknown future and frightening concept that there is perhaps “no cure.”

However, despite your schemes and obvious attempts to damage me: I have learned to stand unafraid of you.

In fact, I want to point out just where you went wrong. The scheme you designed to destroy me has become the one which will strengthen me.

Illness, you have unveiled to me the fragility of my human identity – my weakness, vulnerability and temperance. You have left me sobbing through the nights and brought with you a seemingly endless flow of disappointments.

In your exposing of the temporary you have shifted my focus onto what is constant and stable throughout the ebb and flow of symptoms – the everlasting through the storm you inflict.

Illness, your attempts to clothe me in darkness have only made what is light shine so much brighter. I don’t think you should be surprised by the power of this light. In fact, if I were you, I’d be afraid. As no matter how fierce you get, no matter how much you seek to crumble me, to destroy this damaged body and taunt my pain-stricken mind, you shall never touch what I hold most dear.

1. You cannot take love from me.

I am loved. That is a truth, a steadfast fact. In those nights where we have sat together in the darkness of pain you tried to make me doubt that fact. You brought me to a place of loneliness and made me feel forsaken. However, again and again I have seen that you are lying, illness. I am loved. Loved by the people in my life who have remained by my side. The friends and family who are devoted – who love me despite my imperfections and your threats upon my body.

Together unfailing is the love of my Father. I know this shall never leave. Constant through your waves and faithful in your schemes, this love shall be with me always. This love has extended to the deepest corners of my heart, opening windows of compassion and doorways of understanding, changing the way I perceive and feel. This Love is certainly unrestricted by you, illness.

2. You cannot destroy my hope.

My hope is the confidence in what has not yet occurred. It’s like a shining light in the darkness – a reason to keep pressing on. A reason to get up each morning and fight. Fight for each of the little tasks which you now ensure take so much effort. Hope is that burning fire within me which you sure cannot dull. Hope is this gold substance, precious within my heart. Hope is an ambassador which encourages me to persevere and a friend
who proclaims that victory. Illness, despite your presence I hold fast to my
portion of hope.

3. You have helped to re-frame my definition of strength.

Illness. I’m sure you were not intending for me to see strength this way. I’m sure you want me to envisage running half-marathons and attaining perfection. But, thanks to you, I have learned to re-frame my definition of strength. My strength is not measured by compared “successes” from those of my past-self. Nor is it benchmarked to a standard set by those around me. No – my strength starts from deep within. It’s that quiet confidence that, no matter how many times I am challenged, knocked down, deflated or disappointed by you, I will get back up again and try. Yes, you have made things difficult, illness. Made it harder to walk, to stand and do the most basic of tasks. You have made my muscles weak and beat my heart far too fast.

My strength however, isn’t a measurement of perfection, but that of perseverance. You have taken from me perfection, but you shall never steal this heart to persevere.

4. Never shall you taint my faith.

This is a big one, illness. The one you have relentlessly tried to attack. That pain you have brought planted doubts in my head. Challenging my beliefs, confusing my world perception, cornering me in a position of vulnerability. Nonetheless, like gold when thrown into the fire, my faith has been strengthened through you, illness. Faith is the substance of things hoped for, the evidence of things not seen.

As you, illness, altered my physical world, as you inflicted pain, put road blocks in the path of my activities and darkened my emotions with a quiet sadness, I needed to place my confidence in something above my failing body.

I learned to look beyond the here and now. To place my confidence, my assurance of faith in what was not yet seen. The process of believing without seeing, trusting withhold necessarily experiencing has grown my faith. The storms may come, the fire may burn and disappointments may arise, but solid faith shall remain through it all.

So illness. I’m not sure if I would go so far as to thank you for your unwanted presence in my body. I would honestly love for you to leave me be. However, in the light of your current presence, I can confidently say to you this:

You haven’t won this race. I am equipped with these foundations that you shall never shake. I am in this till the end. 

Your presence, whether chronic or temporary, severe or mild, debilitating
or manageable, will not define me. You will not destroy me.

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The People We Go to When Our Health Is at Its Lowest

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Many of us go through rough times, whether it’s at the hands of mental illness, chronic illness, living with a disability, etc. For those of us who are lucky enough to have people we feel we can turn to when we’re in despair, feeling broken, fed-up and defeated, it can feel like both a blessing and a curse at times.

The person we text when we’re in desperate need of reassurance, support, a shoulder to cry on, somewhere to vent or even just to be listened to, may not even be our closest friend. They may not be a family member, a parent or best friend. They could be an acquaintance. They may even be someone we’ve never met. Someone we know only online, but they see a side and level to us that not many others do.

They see a vulnerable side, what we try to cover up or keep to ourselves.

But what they offer us when we’re at our lowest is invaluable and actually makes them, really, the most important person in our life. I’m not saying they’re of higher importance to you than your partner, parent or child, but if you think about the amount of times they may have convinced you that you do have something worth living for, that you are strong enough to overcome your obstacles, or just listened to your deepest fears and upsets – they have helped you get through some pretty dark times. They’ve helpd you get through some tough battles and moments of despair. Cries for help.

They may well be the reason why you’re still here at all.

And chances are, if they’re the same person you always go to, it’s because they don’t judge you. They are reliable and supportive, and that’s a valuable person to have in your life.

When we are hurting physically, mentally, or emotionally, we often need an outlet – whether that’s screaming into a pillow, doing something creative or venting it to another person. It’s healthy to do so and bottling it up usually just results in a worst outburst later on down the line. But after we turn to someone to vent it out, we may end up feeling silly, embarrassed or ashamed for letting down our wall, after the dust has settled. And we think to ourselves, “I should have kept that to myself.” We may even send countless texts apologizing for our behavior afterwards, of which we don’t need to apologize.

But we don’t want to bother someone else with our burdens.

However, we go back to the same person when life becomes just a bit too much again because they help.

This person and the support they provide are so important.

Part of the reason we have managed to last so long at the hands of our personal difficulties, is likely due to their support and friendship when we turn to them. You may not have even realized this. Perhaps they realize we’re struggling before even we do ourselves, checking in on us or encouraging us to open up, noticing our patterns. The chances are, though, they don’t know just how important a person they are to us when we send text after text, rambling away about all the thoughts in our head, which come out in a muddle. They’re probably not aware of how much they help us, even if they worry their replies aren’t too helpful, because just being there for us often helps.

It would be easy for them to run away when someone comes to them a blubbering mess, angry, frustrated, low or all of those things. But they don’t. And for that, we’re so very grateful.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

Follow this journey on The Invisible Hypothyroidism.

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How I Have Benefited From Keeping a Health Journal

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Recently, I found myself being very discouraged in my health journey. The days seemed to be blurring together, and I was beginning to feel like every day was simply an endless array of symptoms, pain, and medications. Because of this, I decided to start my own health journal to keep track of the days and reflect on them. I figured it would be beneficial, but at the time, I had no idea just how much of an impact it would have on me.

I started by getting a blank journal and recording things that were specific to my health. I wrote down things such as any symptoms I was experiencing that day, my mood, what I ate and how I felt after, any medications I took that day, my pain level and how I felt overall. At first, recording these things seemed tiresome and repetitive. It was even frustrating reflecting on the days and seeing the pages were full – full of symptoms and pain and medications. In the beginning of my health journal, I found myself feeling even more discouraged than before I started. I wanted to call it quits.

But suddenly, something changed. About two weeks into my journaling process, I was flipping through it and noticed just how much the days fluctuated. There were days when there almost wasn’t enough room on the page to hold all of my pain and symptoms. But every so often, I would have days when the page was bare, only a few symptoms and barely any medications. I began to realize that by keeping this journal I wasn’t just keeping track of the bad days, I was documenting the good ones too.

Furthermore, I came to understand that keeping a health journal helped me learn to appreciate the good days more, because I was able to recognize them more easily. It can be fairly simple to become discouraged with your health and overlook the good days because they are so few and far between in comparison to the bad ones. We often let the good days get lost in the never-ending line of bad pain days, but my health journal showed me that they’re there, and they are well worth celebrating.

I would encourage anyone struggling with their health to keep a journal. It can make you feel less distressed and discouraged, and it can help you to better appreciate the value of each day by showing the good within the bad. It also ensures that you don’t forget that there are good days, when the pain is a little bit less and the joy is a little bit more. These days are worth acknowledging and celebrating, no matter how few and far between they may be.

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8 Reasons You're a Warrior for Graduating College With a Chronic Illness

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Graduating from college: a big accomplishment by anyone’s standards. You’ve had to worry about balancing classes, a social life, work and sleep, all while learning how to manage your time and be independent for the first time in your life. It’s not easy! Add a chronic illness or two on top of that and you’re in for a special kind of hell. If you make it through college with a chronic illness, you’re the real MVP. Here’s why:

1. You have to deal with teachers who are ignorant or refuse to accommodate you.

You get to deal with the professor who refuses to let you turn your work in via email even though you physically can’t leave your bed. Or the professor who laughs and doesn’t believe you when you tell him about your illness. And the one who says, “I’m sorry, but rules are rules,” when you ask about excusing an absence or turning in an assignment late. Or maybe the professor who tells you that you need to take the test in the class with everyone else, regardless of what your accommodations letter says. You might also have a professor tell you to drop the class because you’ve missed too many days and “maybe it’s not for you.” This is especially relevant if your chronic illness is invisible.

Pro tip: Register with your school’s Disability Resource Center or visit your student ombudsman (Yes, that’s a real word. Google it!) to help deal with these difficult professors.

2. You have to work really hard to get through each day.

Waking up on a “bad day” and exerting a lot of effort just to attend a class or two but being so tired you can’t follow along with the teaching, dragging yourself home and fighting the need to get some rest since you have to do homework, emailing a professor for the fourth time to try to schedule a make-up exam, trying to teach yourself lessons you missed or couldn’t pay attention to in class because you were too sick, re-reading the same page eight times to try to grasp the concept since your head is pounding, pushing through pain to do seemingly pointless assignments, having to stop, take medicine and go to sleep because your body isn’t functioning, then waking up first thing in the morning and fighting through the medicinal fog and sick feeling to finish the homework so you can start the whole cycle over again.

3. Medication side effects.

Enough said.

4. You frequently miss classes.

Any college student will tell you that once you miss class and get behind, it’s tough, but possible, to catch up. When you have a chronic illness, you will probably miss class and get behind pretty quickly…but as you’re trying to catch up, you’re still battling illness and you’ll continue to miss additional classes. Missing class means having to teach yourself the material, trying to get notes from others in the class, coordinating with the teacher on missed assignments and make-up quizzes (if they even let you make those up), hoping the test isn’t entirely lecture-based and crossing your fingers that the teacher won’t hate you.

5. You miss out on the “normal” college experience.

When you have a chronic illness, you have to weigh whether certain activities are worth it. Going to a football game (even without the tailgate) might mean you spend the next two days in bed, unable to do any schoolwork. Going to parties or clubs? Forget about it. You might not even be able to hang out with friends on campus after going to a couple classes because it is so incredibly exhausting. Maintaining a social life is difficult because most people don’t understand why it’s so hard for you to go out.

6. Staying up late isn’t an option (without serious consequences).

It’s not just that your body will be barely functioning if it’s overly tired while you’re staying up too late, but that’s part of it. It’s just not possible unless you’re prepared to be severely ill and deathly tired for a few days – but people don’t often understand that your body just doesn’t recover as quickly as theirs. But when you have to spend twice as long on an assignment as everyone else…sometimes all your free hours during the day aren’t enough to get everything done. Choosing between getting enough sleep and working on a project that’s due the next day is just another one of those “What’s more important: health or grades?” questions.

Oh, and coffee could make you feel sick, interact badly with your medicine or give you a headache for two days, but you’re welcome to give that a try.

7. You have to deal with the stigma of having accommodations.

So many people just don’t understand chronic illness, and everyone handles it differently. Some will look at you like you are not equal to them. Students in your class may judge you for getting extra time for assignments or different exam accommodations. Your teacher may question your chosen major and suggest you choose something easier. People who don’t know about your condition may see you walk out of the Disability Resource Center and say, “I didn’t know you were disabled! So, what’s wrong with you?” Friends will tell you it’s not fair that you can get an excused absence because of your chronic illness and they can’t. Team members think you’re lying when you tell them why you’re unable to make it to a group project meeting. These things can be offensive, hurtful, belittling and embarrassing.

Here are some of our favorite comments we get from classmates regarding accommodations: “Whaaaaat?! Oh my gosh, you’re so lucky!”

“So is your exam like open book and stuff?”

“Haha that’s great, I should tell them I have ADD or something so I can get that stuff too!”

“That’s not fair. I bet I could get an A if I had all the accommodations you do.”

8. You constantly think about quitting.

Medical leave sounds great until you realize how difficult it would be to come back from.

If you graduated college with a chronic illness, you’re a warrior. Don’t let anyone downplay your accomplishment. You did it! And that’s a big deal! If you’re still in college or plan on going to college with a chronic illness… You can do it! It may take you longer, it may be hard and you might have to push yourself more than ever before…but walking across that stage knowing everything you went through was worth it is one of the best feelings in the world.

college graduate standing in front of a fountain wearing her cap and gown

Congratulations! Now to find a job that will accommodate you…

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