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My Chronic Illness Does Not Make Me Your Back-Up Plan

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“Oh yes, on Tuesday I don’t have anything. Let’s drink wine and watch that new Pixar movie!”

“I’ll totally watch binge watch ‘House of Cards’ with you this weekend!”

Tuesday comes, and my friend or partner tells me they are grabbing drinks with someone and excitedly rushes out the door. I sit there confused because I thought we had plans. Sometimes there is a strange offering of an explanation before they go, but more often they leave without even acknowledging we ever had plans.

It happens over and over. I become the back-up plan because of my chronic illness. I’m the plan people have if no one else wants to do anything Friday night or if they are too tired to go out.

What people fail to realize is that they were my only plan. There are so many days when I can do nothing more than watch a movie and cuddle. When my healthy loved ones say they are going join me, I remember. I am excited to finally have company in this lonely struggle. I finally have something to look forward to in their company.

It hurts to realize to them I am the back-up plan. Easily changed and forgotten. So easily forgettable when the promise of their company was beyond unforgettable to me.

It is already a struggle to maintain relationships. I have to find people who are willing to hang out in a low-key setting instead of always going out. Even when I find people who understand that not every hang-out will be an outdoor adventure, it is a struggle to find people who take your plans seriously.

Staying social with a chronic illness seems impossible. I’m either branded a flake or have my plans not being taken seriously. It is no wonder socializing is such a struggle with chronic illness.

What can you do to help? Take plans you make with everyone seriously. Don’t treat your chronically ill friend as a back-up plan.

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The Biggest Barriers to Treatment When You Have a Rare and Chronic Illness

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When someone first develops unexplained symptoms and they go to the doctor, they have a battery of tests to find the problem. What happens when all of the tests come back normal and the doctor says you are fine, but deep down you know you aren’t? You will probably start going to doctor after doctor, then specialist after specialist, until you finally have a diagnosis.

After being told what you have is rare and chronic, the search for a treatment begins. All the typical medications and therapies do not work, so then you and your doctor have to think outside the box. Thinking outside the box of typical treatments brings you to the world of experimental treatments, but most insurance companies do not cover these.

This is what brings you to the two biggest barriers in having a rare and chronic illness: money and insurance.

When insurance doesn’t cover experimental treatments or they decide it is not medically necessary, you are forced to either look for something else or pay for it out of pocket. Most people do not have thousands of dollars sitting around just waiting to be spent. Many of these patients and their families end up in medical debt just so they can live a normal life. Parents may spend more than they have because they hate seeing their child hurting and will do anything they can to help
them. The patients may spend money they are unable to earn because their illness deprives them of parts of everyday living such as working.

If I were in charge of insurance companies, I would leave the treatment decision up to the doctor. The doctor knows their patient best, they know patients with the same illness, they know what works, and they know what doesn’t work. Why should an insurance company get to decide what’s best for a person they have never met in their life? Only the doctor knows what is and is not medically necessary. No person should ever have to worry about medical bills and no one should ever have to go into medical debt. What is even worse is when the insurance company covers a treatment once. but they don’t cover it the second time which leaves you in $50,000 in medical debt at 19 years old. That should never happen, but unfortunately, it is all too common today.

Maybe someday people will not have to worry about their insurance not covering a treatment because it is experimental or not medically necessary. We know our bodies best and we know what we need. Even if it is experimental, if it works, it should be covered, especially when it has been successful for years. It may be the only treatment that gives someone their life back and have a sense of normalcy.

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To the People Who Try to Tell Me How to Be Sick

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You are not a doctor.

I have many doctors, who have all trained for several years solely in treating people like me. Sometimes, a cure doesn’t exist. That doesn’t mean you can make one up.

You are also not a scientist.

Google does not replace several years of education. Your search is not going to yield information doctors or scientists have not discovered before “mydeliciouscurefoodamazingexercisehellyeah” did.

It is not “luck” that my partner did not dump me in a hospital carpark.

Just because I am sick, does not mean my partner thinks of me differently than when I was well. Just because I am sick, does not mean I am unlovable. My partner and I chose each other because we like each other a lot. It is not luck that my relationship didn’t fall apart when I got sick.

It is not understandable that I lost all my friends.

I don’t care how difficult it is for a well person to be around a sick person — it is unimaginably harder to be the person who is actually sick. I deserve friendship despite my sickness. The friends I no longer have did not have an understandable reason for ceasing friendship with me because I am sick.

It is not luck that I don’t have cancer.

Good luck is not getting sick. Good luck is being well. I am allowed to feel sad and disappointed that my life did not turn out the way I had planned.

It is OK to be ungrateful.

Overnight, I lost the life I knew and had to embrace all this blergh. That sucks. It’s OK to not find good things in being sick.

It is also OK to be grateful.

It is also OK to acknowledge the things being sick has changed for me. It is my job to acknowledge these things, not yours.

You cannot cure me.

And I do not want you to try. To the girl I met on the bus who told me to follow a meditation and diet plan for a minimum of two years — it will not cure me. To the friend who got frustrated I would not purchase Bach flower remedies by the liter — it will not cure me. To the people who recommended diets to me — they will not cure me. These options were discussed and discounted long before you clicked Google. If there was a chance they would help, I have already tried them. There is harm in trying. It wastes time, energy, money, hope and myself.  

I support Big Pharma.

I love that science, scientists, and research has provided me with a few drugs that are safe for me to take and give me a much improved life.

I have made educated decisions about my treatment with my doctors and you do not have a say in that.

I appreciate that your intentions are (usually) good.

But good intentions don’t pop around for a cup of tea. Good intentions do not go down to the chemist to pick up my medications, or drive me two hours to an appointment, or sit next to me in hospital and hold my hand because I am scared even though I was scared last week and the week before and probably will be next week too.

I do not have general unwellness.

If you do not know what is wrong with me, please do not tell me how to get better.

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To People With Illnesses Who Have Lost Hope

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This is to whoever feels stuck in their chronic illness. When you feel like the medicine isn’t working anymore. When you feel like you can’t swallow any more meds. When the doctors give you more meds to counteract the side effects of your other meds. When your esophagus can’t swallow another pill the size of a quarter!

This is for whoever can’t sleep. This is also for those who sleep all night but wake up feeling completely unrested. For those who feel the frustration of remembering falling asleep but not understanding why the 13 hours you slept didn’t do squat.

This is for those who wear the bags under their eyes like a fashion statement. For those of you who know there’s no way you can make them go away, and it takes too much effort to cover them up anyway.

This is for those who are about to give up on their doctor, whether it’s your first or your fifth. For those who can’t take being told you’re “crazy” or your symptoms are “all in your head” anymore. For those who are beyond frustrated with their health insurance companies. For the chronically ill who don’t know who to turn regarding their health and feel so distrustful of any doctor.

This is for anyone with any chronic illness, mental health issue, pain, sickness, exhaustion and/or frustration:

Keep going. You are loved. You are a fighter.

The only thing stronger than your fear and your frustration is your hope. Do not ever lose hope. Even if the only hope you can find is the fact that your Wi-Fi is strong enough to play Netflix through your sleepless nights of binge watching — keep up that hope. Hope in something — in anything — gives one the desire to keep going and to keep fighting.

Hope is the one thing nobody can take away from you. Only you can choose to let it go. Hope is like that little flame inside you that keeps you going. So hope for a cure. Hope for a diagnosis. Hope for an understanding doctor. And if you have lost hope in all of those, hope you can get that 45-minute nap in. Hope for a reason to smile. Hope a sympathetic friend will call you today.

And if you’ve lost hope in all of these things, then hope for a new day. Hope for the sun to come up the next day. Find something to hope for and let that flame ignite into something bigger.

Hope for someone who won’t judge you. Hope for someone who wants to help. Or just hope for an understanding family member to hug you today. Hope for the ability today to get up and walk around the block. Hope for the energy to shave your legs in the shower today. Find something to hope for and don’t lose it.

— The Lyme Warrior

Follow this journey on Blame the Tick.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

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The Top 3 Lies People Tend to Believe About Chronic Illness

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Chronic illness is, truly, the gift that keeps on giving.

It continues to cause medical issues in your life despite treatments, but it can also give family and friends new ways to believe you’re inferior.

Here are the top three lies people tend to believe about chronic illness:

1. You caused your illness.

Regardless of whether you have a type of cancer or autoimmune disease or mental health issue, many people believe you have caused your illness.

Society often blames the victim, and that’s no different in healthcare than it is in criminal cases.

The truth is that no patient or victim has done anything to deserve the wrongs they endure.

You did not cause your illness.

You did not bring this upon yourself.

This is not some karmic retribution for a past wrong.

2. You could walk a mile yesterday, so you can definitely do it today.

The vast majority of chronic illnesses can rapidly change how we feel.

One day, I can attempt to run. The next, I can barely move… Hence, part of why I don’t try to run anymore.

I have seen the same in a variety of patients.

Just because we could do something before does not mean we can right now.

3. You just want to stay at home and be lazy.

Um, no?

Many patients have had great social lives pre-diagnosis with a chronic illness. We don’t necessarily want to be hermits.

We want to come to your weddings, baby showers, nights out and friend vacations.

I want to go to Comic Con and not have to have my husband repeatedly rub my spine while I cry.

I want to be able to stand wearing clothes so I can go to work without missing so many days.

I just want to be able to do what I want to do. No other patients are any different.

Follow this journey on Not Standing Still’s Disease.

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A Letter From Your Least Favorite Patient

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Hi there, friendly physicians.

I’m the sort of patient you intensely dislike. I have a medical history as long as “War & Peace,” several co-morbid chronic conditions and many allergies. I ask a lot of questions and don’t automatically agree with your suggestions. I know a lot about my illnesses, the medications I take, and biology and physiology in general. My conditions aren’t cut and dry; you can’t send me away with a 10-day prescription and declare me cured.

Do I have a more complex case than most of your other patients? Yes. Am I more difficult to handle than the cheerful people who come in once a year, nod, don’t ask any questions and go on their merry way? Absolutely. Do you wish I’d go away? Maybe. And that’s fine.

There’s one problem with that: my illnesses aren’t going away. If I want to stay alive and have the best quality of life as possible, I need assistance from the medical profession. Believe me, if I didn’t require your help, I wouldn’t be in your office.

At the end of the day, we’ve really got the same goals: you want to help your patients, and I want to be helped. The more stabilized I am, the less you will see me, and the easier your job – and my life – will be.

The thing is, we need to meet each other halfway.

I don’t anticipate we’re always going to be on the same page. I’m not expecting you to smile, nod and acquiesce to every suggestion I make. I don’t expect to walk into your office and dictate the course of treatment against your wishes. I know you don’t exist to be a prescription ATM. I wouldn’t bother coming in if I planned to disagree with everything you said. There’s just no point in that. I don’t expect magic cures from you, either – I’m fully aware  at this point in time, a lot of my illnesses aren’t fixable. When I walk into your office I am committed to being polite and respectful to you.

In return, I don’t ask for much, but I ask for everything: I expect to be treated like a human being.

I come into my appointment with certain expectations.

I expect you to respect me as a person first and a patient second, and to treat me with courtesy, not contempt.

I expect you to treat me the way you would want your parents, siblings or children to be treated by a doctor.

I expect you to listen to me when I explain my symptoms, and to realize those hoof beats really are made by zebras sometimes. The fact that a patient’s complaints aren’t easy to isolate or diagnose doesn’t mean they’re not real. We can’t see dark matter and certain subatomic particles, either. It doesn’t mean they’re not affecting our universe every single nanosecond of every single day.

I expect you to understand when a patient says they’ve been “doing research” it doesn’t always mean they’ve been trolling Wikipedia; they might actually be reading and fully comprehending professional journals and peer-reviewed research, just like you. You have to be an expert on many conditions to do your job, and I have to be an expert on myself to survive. If it bothers you, look at it this way: the more I know, the less you have to explain and the sooner I get the hell out of your office.

I expect you to understand I have a say in my treatment, because it’s happening to me. I know that’s frustrating because you’d probably much rather I automatically consent to everything you want, but it is what it is. If I decide the side effects of a particular medication or procedure are deal breakers, I need you to respect that. What seems like a “minor” side effect to you might mean the world to me, and my body is the one that has to contend with it. In such cases, the benefits do not outweigh the risks for me. Considering I’ve lost so much of my health, I’d really like to preserve what I have left, and I don’t think replacing one problem with another is a good tradeoff, particularly if we’re not even looking at a cure. What if that means we can’t treat my condition? In that case, let’s work on palliative care as much as possible.

If you order testing, I expect full disclosure on what it is and what you hope to learn from the procedures. I want to know what you’re looking at and looking for, and I deserve to know what’s going to happen to my own body.

I expect you to comply with state and federal laws, including my right of access to my medical records.

In short, I expect you to keep me fully informed and for us to cooperate to develop a feasible, informed plan for my health. This isn’t as hard as it seems. It requires both of us to listen, compromise, and figure out what will be best for me. This is about my life – not your ego.

If you can’t do these things, we won’t be working together. It’s that simple. I won’t stand for it. I won’t soldier on in silence. I won’t tell myself, “Well, he’s horrible as a person, but…” I won’t feel guilty about asking for a referral to a different doctor. I am paying to see you (or my insurance is); you’re not doing me a favor by gracing me with your presence for 10 minutes. If you can’t treat me with respect and recognize I am a partner in my own health, I’m firing you.

Is it harsh? Yep. I don’t care. To be honest, doc, the gloves are off because I am sick to the teeth of encountering your colleagues who don’t do their jobs, treat their patients with contempt, don’t listen and don’t care. I’m tired of the ones who don’t bother educating themselves on the conditions they’re supposedly treating. I’m exhausted by the ones who ignore decades of peer-reviewed research and pretend legitimate diseases don’t exist.

I know it’s not all of you, or even most of you. You may have gone into medicine for the same reasons I once considered it: to make a difference, help people get well, and explore complex scientific principles. I doubt when you spent almost a decade in medical school and went six or seven figures into debt, you were doing so with the intention of being a jerk to your patients. I know even doctors who truly want to help have a lot of mitigating factors I don’t know about that limit what they can do.

Maybe you’re that rare doctor who considers difficult cases to be a welcome challenge. Maybe you’re one who stays in the rare disease clinic or works in a remote area even though you could easily get a more lucrative and comfortable position. You might be that doctor who hands 10 samples to her patients because she knows they can’t afford their prescription copays but really need the meds. You might be the one who negotiates payment plans, even if that hurts the bottom line, to help uninsured patients. Perhaps you’re the one who is still returning calls and emails from patients at 11 at night. You might do your very best to ensure every patient who walks into your office is treated appropriately and with respect. I get it. A lot of you are absolute superheroes. And I do know some of you personally because you’re part of my treatment team. I appreciate what you do more than I could ever say.

You know those aren’t the physicians to whom this letter is addressed.

I’m sure you get truly rude or abusive patients sometimes, too. I can’t do anything about that, and I’m not them. I’m a person, not a set of clinical guidelines. Please keep that in mind when you’re tempted to judge me on my age, size, chronic illness, gender, income level, or the fact that I want you to talk with me, not at me.

I don’t ask for much, but I ask for everything: I expect to be treated like a human being. It’s as simple as that. This is about my life – not your ego.

Image via Thinkstock.

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