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

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The Mighty community shares the secrets most people don’t know about what it’s like to not be able to work because of an illness.

Read the full version of 15 Secrets of People Who Can’t Work Because of an Illness.

Read the full transcript:

Secrets of People Who Can’t Work Because of an Illness

“I’d rather be at work because being at work means I’m healthy again.”

“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.”

“It’s not ‘fun’ and I don’t have ‘a multitude of free time.’”

“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.

Disability is a full-time job. I’m a professional patient.

“I would love to hold down a regular job. I would like to get to the end and feel like I accomplished something rather than live day to day.”

“No one realizes that a job does more for you than just pay your bills. It is part of what gives you self-esteem.

“I’m bored out of my absolute mind. I hate doing nothing but my body is rarely up for much else.”

“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.

“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.

 

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Having a 'High-Functioning' Illness Is Not a Badge of Honor

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More and more I seem to see things written about “high-functioning” illness. Anxiety, depression, lots of things. In the interest of full disclosure, let me say I meet the very definition of “high functioning,” despite multiple mental and physical illnesses. Unless I explicitly say so, no one has any idea there is anything at all wrong with me. I’m bubbly, funny, accomplished and compassionate. I’m all those things you see “perfectly normal people” being. However, I fight an internal war with multiple chronic conditions every day.

So why would I of all people have a problem with the term “high-functioning?” Simple – because I don’t choose to be “high-functioning” any more than I choose to be completely unable to function. I can’t speak for anyone else, but personally I find the term somewhat hurtful. As if I’m not doing a good enough job on the days when I have a hard time getting out of bed or going to the grocery store. As if being termed “high-functioning” means I have my life together better than other people (I don’t, even if it looks that way). As if I don’t deserve the same compassion on a “high-functioning” day as I do any other day. I don’t want pity – I want equity. “High-functioning” illness is still illness.

 

We spend a lot of time trying to talk about how we can be inclusive, understanding, and not discriminate based on ability or disability. Then we turn around and talk about “high-functioning,” as if the opposite of it is “low-functioning.” I’m guilty of buying into these kinds of mentalities – because I’ve written about what I call “happy depression,” and the difficulties I’ve dealt with being someone with major depressive disorder who is seemingly always “happy.” I could write a few articles about being someone with “high-functioning” anxiety or depression or ADHD. But it doesn’t feel right to me. That term bothers me, and I have a difficult time explaining why. Maybe it’s because it makes me feel even more singled out and different. Maybe it’s because it makes me feel like my condition is being trivialized. Or maybe (probably) it’s because I never feel like I”m functioning very well compared to the rest of the world.

Having a “high-functioning” illness doesn’t make someone’s problems more or less valid. It doesn’t make them more or less serious. It doesn’t mean they are doing a better or worse job of managing their illness. It isn’t a badge of honor – it’s a descriptor. But it is not a description of someone’s willpower or desire for wellness. It’s not a description of success or failure. It’s not a description of life quality. It’s simply another word for invisible.

“High-functioning” is a description of appearance – not substance.

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Thinkstock photo via OGri.

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We Need More Doctors Who Treat the Person, Not the Condition

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For so many people with depression, anxiety and chronic illness, the Diagnostic and Statistical Manual (DSM-5) for psychiatry, or International Classification of Diseases (ICD-10) for general medicine, is a sort of an unwelcome companion in every physician’s office. They are big books that list every psychiatric or medical diagnoses (and code for it) along with the diagnostic criteria. Some doctors seem to practically live in those pages – using them like a checklist, playing a game of “find the condition.” The first time I really understood what it meant for a doctor to “practice medicine” was the half hour my cardiologist spent when he first met me, stethoscope in hand, ICD nowhere to be found. He didn’t need to go rifling through the pages of some how-to guide to medicine – he knew what he was doing, without a checklist. I didn’t realize how lucky I was that my mental health was being treated by equally savvy MDs until a few years ago, when my new psychiatrist gave me the greatest reassurance I have ever heard.

My first impressions of him were something along the lines of “Oh great, this guy is so one of those ‘everything by the book’ doctors.” I had grown up for a decade with a psychiatrist who tended to think outside the box – and that is where most of my psychiatric successes came from. When my new doctor wanted to do “genetic testing” to see what medications might be best for me, it was because I had been through 10 years of trial and error already, and had a high degree of failures. One medication in particular however had worked from day one – and I was afraid his fancy tests might determine I shouldn’t be on it. So, in an unusually rude tone of voice, I asked him, “Well, what if the tests say I should not be on what I’m on, even though it is the only thing that has ever worked?!” He sat his pen down and looked at me for a second, then in the calmest, most understanding voice possible he told me, “Well, I treat the person. Not the condition. Not the tests results. So if you know it works for you, I’m not worried about a piece of paper telling me otherwise.”

 

If there was an appropriate response, I didn’t have it. I just kind of nodded. I was honestly rather speechless. Doctors live and die by pieces of paper. Some don’t even seem to pull their noses out of the DSM or ICD long enough catch your name. That’s what I expected. Another “by the book” MD with no sense of creativity, who was going to march me down a line of “standard therapeutic treatments” no matter what I said. My reactions to medications tend to vary wildly, and it is always highly unpredictable. I rarely, if ever, respond in a manner similar to most people. And often if something doesn’t work, it’s not just ineffective – it is dangerous.

It took almost a year for me to finally feel confident that he meant what he said. I wasn’t just a number or a set of symptoms. No magic – just blind faith, trial and error and courage. That courage, however, doesn’t come from me. I’ve learned to see past his intelligence and accept my psychiatrist is doing this the hard way. No checklists, no guidance, no step-by-step recipe for how to fix me. He’s going through a lot more trouble than he is under any obligation to. It takes courage to say, “Forget the manual, focus on the patient.” We all wish our doctors would do it more often – but think about the bravery of forgoing the holy grail of help, and trying to save someone with nothing more than your experience and intuition.

The next time a doctor takes the time to listen to what you say, and truly evaluate you as a person, not a condition – tell them thanks. It’s not very common these days, and it’s something I hope I never take for granted.

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Thinkstock photo via megaflopp.

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Would You Date Someone With a Chronic Illness?

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Would you be my boyfriend? No, really. I’m 28, a graduate student at a prestigious university, for all intents and purposes I look like I’m in amazing shape, I’m well-spoken, I’m kind, I have an entrepreneurial spirit, I’m loving, I want a family, I have a huge heart and I love my family and friends. But, ugh – well, I have a chronic-illness. OK, maybe four (yes, four) chronic illnesses. Does that make me any less appealing to you? Do you now want to run for the hills? Or would you be my boyfriend?

photo of woman dressed up next to photo of woman with a walker

Would you be able to handle the constant visits to the doctor’s office? Can you remember my triggers? What about the things I’m deathly allergic to? You think you could hold my hand when I walk up large flights of stairs? I have ataxia so sometimes my legs convulse uncontrollably and I can barely stand. How’s your gag reflex? Like, if I throw up, will you throw up? Because I throw up at least once a day. How about: how pissed would you be that I just threw up your hard-earned money or be mad we had to eat at a restaurant that accommodates my limited diet? Ha ha, you laugh, but it’s my reality.

What about holding me at night while my body convulses? Would you hold me tighter or just sleep at your house instead? What about the constant threat of life or death, the responsibility of my life? A split-second of hesitation and my life is on you. Would you do it? No, I mean, could you do it?

 

I don’t mean any of this rhetorically. Actually, I mean it quite literally. A few weeks ago I went on a “blind date” and it hit me: love, loyalty and respect are all novelties I respect and all, but my significant other has to do a whole lot more than just love me. Obviously love matters to me, but I also realized just how much I would need to lean on my person. In between his incessant desire to marry me and make beautiful mixed babies, I found myself not questioning his ability to be a father, husband or financial provider for my future beautiful babies. I wanted to know if he could take care of me if – no, when – the time comes.

Every relationship takes work. Especially the romantic sort of relationships. The cliche “marriage is work” is a cliche for a reason – it’s true. While I’m more than willing to do the work associated with a typical relationship, how fair is it to ask someone to do the work associated with chronic illness on top of the regular woes? It seems unfair. Unfair that the babies will never be – well, they say I’m unlikely to be able to carry them. Unfair that my energy levels temper my desire to interact with people or go out on dates in public. Unfair that my sexual desire is barely existent. Unfair stress induces flares so I’m reluctant to engage in conversations and situations I know will stress me (relationship arguments). Unfair that my medical debt could purchase oceanfront property anywhere and that’s as of right now. Unfair that our relationship could potentially be more about me than us, because at the end of the day, my life is always in the balance. 

So would you be my boyfriend? Would you be the significant other of a chronically ill person, having met them while sick? I guess it’s easy to make a case for someone you already knew. But honestly, I don’t know what a reasonable response to that question is, given the great cost. But what I do know, and what anyone out there with a chronic or serious illness should know, is there are millions of people in the world thriving in relationships with significant others fighting a chronic (or serious) illness.

Typing this, thinking about this, asking myself this, I came to really see agape love in the world around me. It gave me hope. It should give you hope. You will find love – there is someone out there for you. Be patient with the universe. But remember when you have a burning desire in your heart for something, the universe has no choice but to enact the law of attraction and evoke reciprocity. So I have hope – hope not for a boyfriend, but hope in humanity. There are people in this world who have chosen to love someone unconditionally, to be there for better or for worse and to allow that love to be enough to want to be there, to really be there.

I mean, even I met someone who recently told me my cancer, Crohn’s disease, lupus and DRESS syndrome don’t scare him because everyone gets sick and everyone needs someone to help them through hard times. I literally didn’t even know how to respond because I hadn’t received that kind of acceptance and commitment to being in the right with me. Usually guys would freak and allow the overwhelming harsh reality of my condition deter them from wanting to invest in me as a person. So far –we’ll call him Prince Charming – Prince Charming has showed up to help me pack care packages, held me as I began to fall apart emotionally over my health concerns and has made me remember I am more than my illness. I am human too. Illness or not, I deserve to be loved and give love in return, just as much as every one of you.

Never forget that.

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Anthem Blue Cross/Blue Shield Will Charge Members for Non-Emergency-Related Trips to the ER

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If you are someone who lives with a chronic illness or disability, it’s likely you’ve visited the emergency room for issues relating to your condition. Trips to the ER are usually designated for the worst flares or ones that occur in the middle of the night when your doctor is unavailable — but what constitutes an emergency and whose job is it to decide?

If you have Anthem Blue Cross/Blue Shield and live in Georgia, Missouri or Kentucky, a new insurance policy might affect your decision to visit the ER. According to NBC News, starting July 1, Anthem members will be responsible for the cost of their ER visit if the trip was not an emergency.

“Save the ER for emergencies — or cover the cost,” a letter sent to Blue Cross and Blue Shield of Georgia members, obtained by NBC News, states. “[S]tarting July 1, 2017, you’ll be responsible for ER costs when it’s NOT an emergency. That way, we can all help make sure the ER’s available for people who really are having emergencies.”

In its letter, Anthem defines an emergency as:

A medical or behavioral health condition of recent onset and sufficient severity, including but not limited to, severe pain, that would lead a prudent layperson, possessing an average knowledge of medicine and health, to believe that his or her condition, sickness, or injury is of such a nature that not getting immediate medical care could result in: (a) placing the patient’s health or the health of another person in serious danger or, for a pregnant woman, placing the woman’s health or the health of her unborn child in serious danger; (b) serious impairment to bodily functions; or (c) serious dysfunction of any bodily organ or part. Such conditions include but are not limited to, chest pain, stroke, poisoning, serious breathing problems, unconsciousness, severe burns or cuts, uncontrolled bleeding, or seizures and such other acute conditions as may be determined to be Emergencies by us.

A spokesperson for Anthem told NBC News its policy is designed to prevent people from abusing emergency rooms: “What we are really trying to do is make sure that people are seeing their doctors first.” However, according to its letter, whether or not your visit was an emergency is ultimately up to the insurance company to decide. If they feel it’s not an emergency, you may be stuck with the bill.

A spokesperson for Anthem in Georgia told the Los Angeles Times the policy does not affect children under the age of 14, visits made on a Sunday or holiday, and people who lack a nearby urgent care center (within 15 miles). “Symptoms of potentially more serious conditions, such as chest pains, could be seen at the ER even if they turn out to be indigestion,” Anthem’s representative said. Rather than have people visit the ER, Georgia’s Anthem coverage is hoping to reroute patients using telemedicine and urgent care centers.

The American College of Emergency Physicians (ACEP) says Anthem’s new policy is not only bad for medicine, it’s illegal. “[M]aking subscribers pay for any emergency department visit that turns out not to be an emergency, violates the ‘prudent layperson’ standard, which is codified in federal law, including the Affordable Care Act. It’s also law in more than 30 states,” the group wrote in a statement.

Forcing people to triage and diagnose themselves defeats the purpose of emergency care. “If patients think they have the symptoms of a medical emergency, they should seek emergency care immediately,” said Rebecca Parker, MD, FACEP, president of ACEP.  “The vast majority of emergency patients seek care appropriately, according to the CDC. Patients cannot be expected to self-diagnose their medical conditions, which is why the prudent layperson standard must continue to be included in any replacement legislation of the Affordable Care Act.”

Thinkstock image via ImageegamI.

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A Poem for Chronic Illness Warriors

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I hear your cries. I know your pain. I feel the rhythm of your fear at night, when you pray you’ll wake again.

It’s gone too far. For far too long. But you have never given up because inside you are so strong.

On the outside, falling down, falling apart. It’s about time, when the tears fall in the dark.

Don’t give up. Look how far you’ve come. All those times when you thought you’d come undone.

You are a warrior. You are a queen, you are a king. You are the hero, for all who’s felt the same.

Stand up and shout it out, be proud, I’ll never doubt, you now, let’s figure out a way.

My hand is here my heart has found, your strength appears, your love abounds

Because

You are a warrior. You are queen, you are a king. Going forward. You can make it through this thing.

I believe in you, you made it through today.

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Thinkstock photo via Uladzimir Bakunovich.

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