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When You're Constantly Forced to Choose Between Your Job or Your Health


With the rising cost of health care and the cost of living in general, it’s nearly impossible for a middle class person not to work. For people like me who have a chronic illness, the cost of living and health care are even more expensive, and trying to hold down a job can seem impossible at times, too.

I have endometriosis, which is a condition where tissue similar to the lining of the uterus is found outside the uterus, possibly attaching to organs in the abdomen. It can cause heavy periods, painful cramps and infertility. I also have ovarian cysts which eventually rupture instead of resolving on their own. While endometriosis and ovarian cysts are common, there is no cure for either, which classifies both as chronic conditions.

Nearly 117 million people in the U.S. have a chronic illness. That makes up nearly half of the U.S. adult population. If so many people have a chronic illness, then why are those who are sick constantly forced to choose between their job and their health?

Job vs. Health: Which Is More Important?

Living with this condition (or any chronic illness, for that matter) makes holding down a job difficult. I have been out of college for a year and working full-time while simultaneously battling the worsening of my condition. Some days I can’t eat or even get out of bed because of the pain and nausea. But, that event I need to go to or that client I have to meet can’t always accommodate my illness. Regularly coming in late or leaving early because of doctor’s appointments doesn’t look good either.

More often than not, chronically ill people are faced with the decision to either take care of themselves or keep their jobs. Of course, there are laws that protect disabled individuals. But, not all workplaces are required to give you paid time off, sick leave, etc. With some companies, if you aren’t at work, you don’t get paid, and if you don’t show up for a lot of your shifts, then you can get fired.

Getting and Maintaining a Job

Many companies ask you to fill out a voluntary disability self-identification form when applying for a job. The first paragraph of the form might say:

Because we do business with the government, we must reach out to, hire, and provide equal opportunity to qualified people with disabilities. To help us measure how well we are doing, we are asking you to tell us if you have a disability or if you ever had a disability. Completing this form is voluntary, but we hope that you will choose to fill it out. If you are applying for a job, any answer you give will be kept private and will not be used against you in any way.

When I started my job search I felt compelled to disclose my illness on this form, but after about two months, I noticed I wasn’t getting any responses from the multiple positions I applied for. The next round of applications I sent out, I either did not fill out the form or said I did not have a disability, and I started getting responses from potential employers. Is it just a coincidence? I really don’t think it is.

The bad news is, there’s nothing you can do if you are disqualified from a position because of your illness. There’s usually no way to prove that you were disqualified because of your disability, because the employer can say you were not a good fit for the position or not qualified for it.

Because of this, many chronically ill people lie on this form and try to hide their illness. You are not legally required to tell your employer about your health problems, especially during the interview process. But once you are hired and notice that it may affect your work, it might be a good idea to say something.

“I’m OK.”

The problem with a lot of chronic illnesses is that they are “invisible,” meaning you can’t see the illness on the outside. Since a lot of these illnesses are invisible, people who are sick may feel the need to hide their illness. “I’m OK” is probably a chronically ill person’s favorite phrase. A person with a chronic condition could be smiling and laughing on the outside but feel like absolute hell on the inside. But we may not want to draw attention to our illness, so we hide it behind smiles and “I’m OK”s.

Another problem with these invisible diseases is that people often think we are faking it. When most people think of someone who is “chronically ill,” they think of a patient with cancer who has lost their hair from chemotherapy or a person in a wheelchair. They don’t usually think of someone who looks well and gets up and goes to work every day. Unfortunately for most people, seeing is believing; if they can’t see it, they don’t believe it.

I was transparent with my previous employer about my condition, and many times after a doctor’s appointment or a sick day I was told to “grin and bear it” and try to make it into work. I looked OK on the outside, so my supervisor couldn’t understand that my insides felt like they were being torn apart and that it was all I could do to get out of bed. Again, in these situations, we are forced to choose between our health and our career.

Work Hard, Fight Harder

Unfortunately, those of us with chronic illnesses may have to work harder than those without. On top of working a job full-time, we are fighting our disease full-time, too. Having a chronic illness is its own full-time job, and in most cases, it comes with overtime.

In our careers we will have to work harder to do good work and prove that we are able, even though on a government form it says we are disabled. Work hard at your job and fight your disease even harder. But remember to take care of yourself. In my opinion, at the end of the day, your health is more important than a paycheck. So when it comes to choosing between a job and your health, I recommend choosing your health. Jobs will come and go, but you only get one life.

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33 'Habits' of People With Brain Fog


When you have a chronic illness and/or are taking certain medications, you may start to develop a symptom known as “brain fog.” Brain fog can affect your cognitive abilities and make it challenging to remember even simple information or communicate effectively with others. In order to cope with these challenges, many people may find themselves picking up “habits” or engaging in routine behaviors that help them through the frustrating cognitive impairment brain fog can cause.

We asked our Mighty community to share the habits they’ve developed – good or bad – because of brain fog. Maybe some of the following will sound familiar to you, too. Let us know how you cope with brain fog in the comments below.

 

Here’s what the community shared with us:

1. “Lists! My life consists of lists. And reminders on my phone. I have them pop up to remind me things constantly. Such as taking my meds, not forgetting to do something important, reminding me of appointments, etc. I’m 25. I shouldn’t have to do this. But that’s how I function.”

2. “I talk to myself. A lot. I have to narrate my life or I’ll forget what I’m doing.”

3. “Recording virtually everything I need to remember in the notes section on my phone. Especially things I want to remember to say/questions I want to ask in important conversations.”

4. “I isolate as much as I can. I can’t stand the humiliation I feel when I can’t form a sentence. Bare minimum human interaction.”

5. “I rely on caffeine to make it through my day. I work in the school system, so I don’t really get any breaks. I have to be ‘on’ until the moment I get into my car and drive away. Drinking coffee, tea, soda, etc. is the only way I can keep my brain from turning into mush.”

6. “I find myself stuttering a lot. I’ve never had a stutter, but I forget what the words are or what I’m trying to say, so I trip over the words coming out. It’s so frustrating.”

7. “When I’m leaving the house, I say to myself, ‘Keys fix everything’ as I physically check to be sure I have them. And it’s true – as long as I can get back in the house, I can solve almost anything else that might arise from my brain fog.”

8. “Taking way too long to get anything done. (Not procrastinating, but like moving through peanut butter. It’s like my brain is on slow-mo.)”

9. “I tell other people (my husband or my mom) what I plan to say/do, so that when I forget, I can ask them for a reminder.”

10. “I try not to make phone calls because I have a hard time thinking up responses quickly.”

 

11. “[I] love using my Google calendar which my Amazon Echo can access. I just ask Alexa what’s on my calendar. The different alarm sounds remind me about daily activities, plus we can now put in scheduled reminders like ‘run the dishwasher’ so I don’t forget.”

12. “Blinking a lot, very quickly. I think it’s a nervous habit when I know my brain isn’t working well.”

13. “Re-watching a TV series less than a year later and having fun being shocked and surprised all over again because I forgot even the most iconic scenes!”

14. “I constantly repeat questions back to someone. So they ask me, ‘Hey, is today a day?’ And so I ask back, ‘Is today a day?’ and when they confirm that’s what they asked, I will answer. I do this so much it annoys even me but it has drastically cut down on me misunderstanding what people are asking me.”

15. “When I have brain fog, I double or triple check who I am sending messages to.”

16. “I zone out mid-conversation. Someone could be talking to me about something important and halfway through I need them to stop and tell me everything they just said, but very simply. It makes people think I don’t care but I can’t help it when my brain fog makes me get lost in the conversation and I need that occasional ‘pull on the leash’ to keep me mentally active in it.”

17. “Keeping busy with chores because cognitive tasks are too difficult.”

 

18. “Putting food in the microwave then forgetting it’s there shortly after and grabbing something else to eat.”

19. “I take screenshots of everything on my phone. Texts, websites, dates on my calendar, images, etc. I will even write myself notes and take photos of them. It’s the best way for me to keep all the information in one place I can access easily without worrying about misplacing a piece of paper or forgetting a bit of information.”

20. “I try to play games that exercise my brain to work fast. I don’t know that it helps, but I hope so.”

21. “I constantly forget words mid-sentence. I describe them in great detail, hoping the other person can fill in the blanks, while clicking my fingers.”

22. “I interrupt people because otherwise I will forget what I want/need to say. I don’t mean to do it but I’ll never remember what I was going to say unless I say it when it comes to me.”

23. “I have to do everything in order. If I don’t, if things get out of sequence, then I forget stuff. If someone talks to me while I’m getting ready to go out the door, I inevitably will forget to take something important.”

24. “I don’t have the energy to argue or put up with negative people anymore, so they’ve naturally weeded themselves out of my life. It takes a lot of energy to argue and my brain fog doesn’t give me a sharp mind to do it, so I just don’t. That’s a positive.”

25. “I text people immediately when I think of something I need to say because god knows I’ll forget it in five minutes… My few close friends have all learned that keeping their phones on ‘do not disturb’ at night is best.”

26. “Double and triple check my bag before leaving the house to make sure I have all the necessities: wallet, keys, medication, water, powerpack and cables to charge my phone.”

27. “Repeating myself over and over again as I forget what I have already said. Asking the same question more than once as even though I have heard the answer, I can’t remember what it was. Having a whole conversation with someone, but not remembering what we spoke about seconds later.”

28. “I photo document everything in life. I don’t want to forget precious memories because of brain fog.”

29. “I’ve started to forget when I’ve taken a shower or brushed my teeth last, so I shower twice a day and brush my teeth upwards of four times a day. That way if I miss one time, I’ll still be really clean from before.”

30. “I get overwhelmed by everything because I can’t think straight, focus or remember what I was doing, and so I then shut down.”

31. “Starting various different tasks as it comes to mind so I won’t forget to do it. The problem is, I start additional tasks one after another and I forget what it was I was doing in the first place. Doing one thing makes me think about doing another, so I do that thing while it’s on my mind and on it goes! I heard I should take care of something when I think of it so I don’t forget, but I obviously don’t follow it through properly!”

32. “I forget where I set things down and run around searching for them. I often run my Keurig without a mug under it, which is always fun. My brain doesn’t seem to work at all anymore.”

33. “Writing everything down! Even if I think ‘there is no way I could forget that,’ I have had too many times where I do forget it, so I always write little bits of information and thoughts and notes down, which is way helpful – as long as I can remember what the notes meant!”

33 'Habits' of People With Brain Fog
couple kissing outside in front of trees

To the Man Who Loves Me Despite My Chronic Illness


When I met you, you were a little lost. You didn’t know what you wanted to do or where you wanted to go. I, however, had it all worked out; the city move, the study, the career. The more I got to know you the more I realized I wanted you above all other things. I ditched the city dreams and put the study on hold. I was 17 and had a world of possibilities in front of me, with no interest in settling down. You changed that though, somewhere between that dimpled smile and those luscious curls I changed my life plans – and it was the best decision of my life.

We were young and in love; perhaps sometimes a little foolish and naïve, but we made it work. I helped you find direction, and you helped me find purpose. I watched you transform into a man as you started a career and set long-term goals. I learned how to be not just a girlfriend, but a partner, as did you. We both grew up together, transitioning from kids in lust to adults in love. It was truly a magical experience.

couple kissing outside in front of trees

Over the years we realized a relationship is more than just loving the other person; it’s compromise, sacrifice and hard work. We learned that love is not what keeps two people together – a relationship needs so much more than just love to survive. We’ve been through some of the best times in our lives together and some of the worst. We’ve traveled and adventured. We have seen every good, bad and awful side of each other. We have loved each other for 1460 days.

Our relationship has been tested in many ways, sometimes getting close to the end, but there has never been a day where we didn’t say the words I love you to each other. In the past year, our relationship has struggled through its biggest challenges yet, and survived. If I didn’t know it before, I know it now – you are the man I want to spend every day for the rest of forever with. You didn’t need wedding vows to promise me “in sickness and in health” – you just did it. When given the chance to stay or run you decided to do both. You decided to stay with me and run to the ends of the earth to look after me; for this I can never thank you enough.

You have carried me, both physically and mentally, through my toughest days. You’ve cried with me through the emotional rollercoaster of chronic illness and reassured me every day that things will be OK. Sometimes I get so caught up in my struggle that I forget that it is also your struggle too. I can’t even begin to imagine what this is like for you. All I know is it can’t be easy.

I sometimes get caught up on how much better off you would be without me and the burden that is my illness – I know you’ve thought it too. But that’s OK because even though you know how much easier life would be with a “normal” and healthy partner, you choose to stay with me and for that I am eternally thankful.

I could spend forever apologizing for holding us back and forcing us to change our whole life plans, but that wouldn’t do either of us any favors. Instead of spending the rest of my life saying sorry, I want to spend it saying thank you. Thank you for holding my hand when I am scared, and pretending you are brave even though I know you’re just as scared.

Thank you for being patient with me when I am having a rough day. Thank you for telling me I am beautiful; not when I’m dressed up and wearing makeup, but when I’ve just woken up. Thank you for dedicating your life to making this relationship work and sacrificing so much for us.

There aren’t too many men that would do what you do, I hope you realize just how special you are. My only comfort some days is knowing I would do the same for you if our roles were reversed. I’m sure you wish you could take the burden of my illness from me as much as I wish I could take the burden of supporting my illness from you.

You fill my life with love, hope, courage and strength every day. I don’t know where I’d be today if it wasn’t for you. I love you millions.

This post originally appeared on Finding Rainbows in the Dark.

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Why I Think Doctors Should Take Time to Read Stories on The Mighty


It took me a solid six years, and countless specialists, to arrive at a diagnosis. This isn’t unusual for my illnesses. As a matter of fact, some people wait over 10 years for diagnosis, and in rarer cases, even longer.

I feel like this is something that can change. While some illnesses are very hard to diagnose and involve ruling out a lot of things over years, there are others that are missed by different specialists.

 

On The Mighty, there are 8,000 patients and family members or friends of patients pouring their feelings about their medical situations into words. Imagine if every doctor read even just a few articles. What if they were able to read and process what their patients are feeling?

Often a doctor appointment is short. You’re in and you’re out, and in that very short amount of time, the doctor sometimes has to make a judgment about you. There are so many variables they have to consider, and there is not enough time in an appointment for the doctor to understand not only the issues and concerns the patient comes in with, but also their feelings surrounding it. And so a lot of assumptions have to be made about the patient. This can be based on their history, their appearance, their age. And it often leads to the patient leaving the appointment feeling like they weren’t taken seriously, or that the doctor didn’t care.

This is the type of thing that leads to an example situation like this: A patient comes in complaining of overwhelming fatigue and joint pain. They have a history of depression and anxiety and are on antidepressants. Based on this history and the lack of time able to be spent with the patient, the patient is told they should try and exercise a bit more, and they run some very standard blood tests and when they come back normal, they’re told it’s probably just a manifestation of their depression, or just normal aches and pains.

This is just a random example. But if more doctors read articles from The Mighty, from the people whose lives are in their hands, maybe things would be different.

I can’t help but think it would be so helpful for a gastroenterologist to go into the gastroenterology section of The Mighty and read some articles and get a patient’s perspective on life living with the illnesses they treat. Reading about their experiences with doctors so they can better themselves. Because everyone can always learn and better themselves.

They see visits with dozens of patients a day through their own eyes. But what if they got to see the visit from the eyes of the patient? Maybe we’d be a bit more understood. Maybe we’d be a bit more heard. Maybe we’d be diagnosed and treated more quickly than we are today.

Follow this journey on Love, Light and Insulin.

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How I Choose to Respond to 'How Are You?'


“I’m here. Thanks for asking.”

That’s my new response when someone asks me, “How are you?”

I don’t believe that my friends really want a true, detailed response. And, I refuse to lie or minimize for their comfort. Sometimes I just don’t want to talk about it. It makes me feel too identified with my illness. I rarely feel 100 percent. Actually, I never feel 100 percent. I don’t really remember what being totally well is like anymore. Nowadays, I have good days, OK days, not so good days, and dreadful days.

Good days are days when I can do most of the things that I would like to do. There aren’t a lot of these. Most of the time I am in “OK days” and “not so good days.” On these days I will still have visits with friends but will usually leave early and then have to rest for several hours. These are the days where I need to be cautious and careful.

So when they ask how I am, I say, ” I’m here.” This says that I am not fully well, but you don’t have to listen to a description of my illness and what is going wrong at the moment. I actually find this helps me. I don’t want to have answer constant questions about my health issues. I have a chronic illness. Chronic means “doesn’t go away.” I hope my response doesn’t appear rude or condescending as I have no intention of being like this. I just find it tiring to explain the complexity of my health issues and how they interact. The only people really interested in the details are me, my doctor and maybe my husband.

“I’m here,” gives my friends permission to understand that I am not feeling fantastic and that I do not expect them to feel that they must ask any further questions about my chronic illness. It also tells them that I accept not being 100 percent well and that I will continue to try to participate in activities and socializing with them as best I can. We can then get on with enjoying one another’s company as there is more to me than chronic illness. I don’t want chronic illness to be focussed on. Chronic illness is only one bit of me, albeit something that has brought many changes into my life.

I think that being able to say “I’m here,” indicates that I trust these friends and know that they really do understand the issues that I have with my health. They actually “get” chronic illness. I know that these friends will be supportive when I ask them for help or, they will understand if I cannot join them sometimes, or, that I need to drop out at the last minute sometimes, or that I may have to leave early.

“I’m here,” and, “Thanks for asking,” has released me from explaining myself all the time. It makes chronic illness easier for me.

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Thinkstock Image By: stevanovicigor

A graphic of a woman looking down, with a serious expression.

When Chronic Illness Isolates You


I once had a bustling social life. I was in sales and got to talk to and meet new people on a daily basis. One enormous life-changing illness later, I spend almost every day completely alone. I have come to prefer this in some ways, and in other ways the isolation is crushing.

Most days I literally don’t speak to anyone until my husband comes home. He tells me stories of his day. I used to have stories about my day. Now to recount my day is just a laundry list of what I had dealt with that day physically and if I feel OK. Not much levity there. Want to hear about how I still can’t get the medicines I need because the insurance sucks? No. No one does. Illness slowly changes your image, “She used to have such stories. Such drive. Now all she talks about is her illness.”

So make plans, right? Not as easy as you would think. I have to cancel probably 75 percent of the plans I make. Due to my condition I deal with nausea, vertigo, tremors, partial paralysis and aphasia. And it’s not a predictive condition. It’s either try and make plans or resign yourself willingly to loneliness. But then the day rolls around and you watch your concert tickets go to waste.

People don’t understand isolation. Especially when it’s not chosen. Sure, I would love to have breakfast with you, only I will literally throw up on the table. I’d love to be able to go out so often that when I go it’s not a big deal. But it is. If I can make it to an adult event where I get to see and talk, suddenly I’m self-centered and want to take over every conversation. Y’all. That’s not it. I am happy to be out of the house. So it’s a lose-lose. Even if I do get to go out my sheer giddy excitement is obnoxious. It’s easier to stay alone sometimes.

People tend to think of illness as a temporary thing. You bounce back and all is well, or you die. But a lot aren’t. A lot of illnesses stand back and make you watch the person you were become a ghost, sliding further and further into a person no one understands.

And it’s hard.

I’d like to tell you I have found some secret to happiness while spending so much time alone. I haven’t. I’d like to tell you the people you hold dearest to you will always understand. They won’t. But I can tell you that no matter how alone you feel, you are strong enough to make it to that next good day. And hopefully you’ll make a story that day to tell.

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

Thinkstock Image By: bignoze

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