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I Can't Afford My Healthcare, and Yes, I Have an iPhone

Recently Representative Jason Chaffetz was confronted on CNN about the difference between having health insurance and having “access” to health insurance. As Chaffetz applauded the newly revealed Republican replacement for the Affordable Care Act, he said in response:

“So maybe, rather than getting that new iPhone that they just love and want to go spend hundreds of dollars on that, maybe they should invest in their own healthcare.”

It’s a flippant stereotype I’ve heard time and time again — the idea that people who can’t afford their medical care don’t know how to live within their means. I’ve had friends and family who posted things during the election like, “Obamacare is socialism! Get a job and pay for your doctor’s bills like the rest of us!”

For what it’s worth, my husband and I don’t qualify for any subsidies, and we do pay for all our own healthcare. In fact, my husband’s healthcare plan from work was so poor and had such a high deductible that we had to purchase a private marketplace plan just to get access to ongoing and consistent care for my chronic health issues. But even with my husband’s decent salary, our healthcare bills have become so enormous that we’re looking at the stark reality of selling our home this summer because we simply cannot afford to keep our house and pay our medical bills. It’s worth noting that we bought this home less than three years ago when we made the difficult decision to move out of state — leaving our family and everyone we knew — in an attempt to lower out cost of living. Even that radical step hasn’t been enough to offset the enormous weight of my medical bills.

In the past three months we’ve spent over $9,100 on my medical care – and that’s while going without a number of recommended treatments and therapies because we simply can’t afford them. The reality of having a chronic health condition like Lyme disease is that I will very likely require expensive and ongoing care for the rest of my life. In fact, according to Lyme Stats, the average annual, out-of-pocket cost for a Lyme disease patient in this country is $53,000, not including insurance premiums. That’s not including the additional costs of other issues caused by my Lyme: worsening eyesight requiring regular changes in prescription lenses, expensive seizure medications, cardiologist’s care (Lyme has damaged my heart), physical therapy for arthritis-related issues, psychiatric care/medications (the neurological damage causes issues for me with anxiety and fatigue) and more. Add to that the costs of regular illnesses and preventative care, and that’s only the costs for me – there are three other people in my family as well, one who has autism and ADD and needs his own therapies and medication.

For the record, I actually do have a shiny new iPhone. It costs me around $25 a month. I didn’t actually want a brand new phone. When my last phone died my carrier told me they couldn’t offer me a repair on the old model but they could give me a brand new phone. They offered a low-cost installment plan with no cost to me up front with a monthly bill almost identical to the one I walked in with. Obviously I walked out with the new phone.

Let’s say theoretically I had declined the new iPhone they offered me, and had opted to go with a cheap flip phone instead to save that $25 a month and “invest it into my healthcare.” What exactly would that $25 a month have covered? Or lets look at the total one-time-value of the phone, somewhere around $600. It doesn’t even cover one month of my insurance premium, let alone any of my out-of-pocket costs, and then its gone and I’m still needing to come up with thousands of dollars each month for my care. Is there some benefit to this idea that I’m not seeing? Or is it just the idea that people who need a little extra help — be it with medical bills or unemployment or food stamps — should never have anything other than the bare minimum?

The reality is, my husband and I have sacrificed left and right for my healthcare costs. We have been on exactly one vacation in our eight years of marriage – our honeymoon, and only because that was a wedding gift generously paid for by my parents. We spent five years living in a low-income neighborhood and had to go without in order to make our budget work. My kids can’t participate in extracurricular activities. My younger son can’t go to preschool. We can’t afford to hire help with childcare or housework during times when I’m effectively bedridden. It feels as if we give up so much each and every day, yet it’s still not enough. We are exhausted, stressed out, and working our tails off to do everything in our power to “pull ourselves up by our bootstraps,” and it’s simply not possible. The system feels rigged against us, and we always comes up short. Plus we have the constant, ongoing stress, without any chance to rest and recuperate from it all. It doesn’t exactly help with fighting chronic health conditions.

And yet, we feel far more privileged than most. There are people making less than my husband, facing bigger medical bills, and in some cases facing the very real possibility of death because they can’t afford life-saving treatments. We don’t forget there are people who have more struggles than we do.

It’s discouraging to see those of us struggling with overwhelming medical bills be written off as bad budgeters, lazy moochers looking for handouts, or worse yet, as acceptable collateral damage in order to lower the healthcare costs of others. I didn’t choose to have these chronic health conditions, and believe me when I say I would gladly trade them for a full-time job and feeling like I am seen as a valuable member of society. But how can those of us with chronic health conditions do that if the cost of treatment is out of reach? How can we ever hope to improve our health and return to a productive society if we are denied a way to pay for our therapies and medications, let alone a chance to rest and recover without the stress of these medical bills? And if we don’t recover and need care for the rest of our lives, does that mean we shouldn’t ever be allowed anything more than a bare minimum – or worse yet, should we just be discarded entirely? Are we not allowed to own an iPhone, or go out to anniversary dinners or go to the beach for a weekend because we couldn’t afford the tens or even hundreds of thousands of dollars in medical bills thrown our way? Is our value attached to how much money we have?

Mr. Chaffetz should rethink his callous and careless words – and then rethink his stance on healthcare. For many, our lives and our livelihood depend on it.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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17 Secrets of Being an Extrovert With a Chronic Illness

If you’re an extrovert, you’d probably rather be chatting up new friends at a party than chilling at home alone. You’re most satisfied when you’re around others, and if given the choice, you’d likely choose to be wherever your “people” are. But what if you aren’t always physically able to go out and spend hours with your friends? What if you’d want nothing more than to grab drinks with co-workers, but you’re in a flare and need to spend the weekend on the couch? For many with chronic illness, this is a reality.

We asked our Mighty community with chronic illness what it’s like being an extrovert while dealing with an illness. When you’re a “people person,” being physically unable to get to your friends can be tough. If this is the case for you, know you’re not alone, and there are many other social butterflies going through the same challenges. And if you’re reading this because you have a friend with a chronic illness, don’t forget to reach out and include them in your plans, even if they frequently have to turn you down.

Here’s what our community told us:

1. “When I’m sick it’s really difficult. It can be really isolating when you don’t have sick friends and you have to forgo a social life to stay in bed. It’s lonely, which drains me. But because I’m an extrovert, I can bring people together and form spoonie communities wherever I am, which is really important so people like me feel less alone.”

2. “Due to medication, I am unable to leave my home much because I cannot drive. So if people do not come to me I am alone all day until my husband gets home. I am a people person. It is more devastating to me to be alone than to be in pain.”

3.It almost feels as if you’re chained down and you’re looking out the window seeing everyone living their lives but mine is in slow motion. It’s heartbreaking. I feel like I am constantly grieving, dreaming of my old life.”

4. “It’s hard because the isolation can be [overwhelming] on some days. I’ve lost interaction with lots of friends because they are always busy (like I was until I got sick). They would still be there for me if I asked, but socializing is near impossible because I never know if a flare will happen.”

5. “Holidays are so hard because I feel obligated to socialize when I’m in severe pain. I just plow through. I feel guilty that I don’t enjoy it. I smile and make small talk, but inside I’m in hellish pain. I try focus on love for people around me, otherwise I’d collapse.”

6. “I think a plus is that my extroversion helps raise awareness of my condition — it’s not well known, and I am always happy to talk about it. A downside would be that I can now hide most of my pain so well that people don’t realize I’m not coping at times.”

7. “The positive aspect of being an extrovert with a chronic illness is that having friends around or making plans is a great distraction from your medical real life. The negative is on the days you have absolutely no energy to be social or carry on a conversation, people think you are upset or mad or even upset with them. It is sometimes hard to explain not having energy to talk or pretend.”

8. “I’ve become more of an ambivert due to taking time for self-care. I have a lovely community online that I am active in even when I can’t get out of bed, which helps my social heart, and I try to get out whenever I can to appease my inner extrovert. It’s a balancing act.”

9. “I think a negative aspect of being an extrovert with a chronic illness is it causes others to expect more out of you. Being more in the spotlight causes you to be watched more by your peers. Even on bad days, people expect you to be at the 100 percent you are at on a good day.”

10. “Had I been an introvert before, I think the circle of people aware of my illnesses and infirmities would be much smaller. But since I was not only physically present and active prior to being disabled, I think my absence is more noticeable.”

11. “It’s a blessing and a curse actually — I’ve always been an extrovert — I used to do a lot of performing, I’m very sociable, love partying and being around friends. On the one hand, it can be very lonely, and people who’ve known me as a party girl are shocked when I can’t make it out. It’s when they stop inviting me to stuff and I see photos of epic nights on Facebook, I can’t help but feel pretty low. On the other hand though, I’ve learned to enjoy my own company, I don’t drink as much as I used to and it saves a lot of money! I do miss it.”

12.I canceled sleepovers in high school because I was scared to annoy my friends by taking my breathing treatment every four hours in the winter and during swim season. My friends just thought I had strict parents and rarely invited me to anything.”

13. “I am constantly pushing myself to continue to be the life and soul of the party and uphold my positive attitude towards everything despite being in agonizing pain, barely being able to move.”

14.I am by nature an adventure-seeking extrovert. I loved adventure and was a social butterfly. I sit back and watch everything now. It’s like the best and most inner parts of me I love are locked in a box. My illness dictates what I do. I am still all of those things but have to function, and functioning takes priority over any recreation.”

15. “Being an extrovert with chronic illness means I overdo it way too often to get the social interaction I crave… I pay for it later, but I will spend afternoons in terrible pain, nauseous and on the brink of tears but happy to be in a room full of people so my extroverted self can refill its batteries.”

16.I obtain my motivation and energy from being around people. I am usually able to leave the house whenever I want, but my chronic illnesses cause pain that can make the whole experience unenjoyable. It’s a lose-lose situation: go out and get a flare-up, or stay home and feel antsy from isolation.”

17. “It’s weird because you feel like you’re two different people. When I’m socializing I try to be lively and that’s good in one way because it’s sort of helpful in distracting me from the pain. However, once I get alone I have to deal with all that extra pain I caused myself by socializing, so I turn into a completely different person.”

17 Secrets of Being an Extrovert With a Chronic Illness
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To Those Who Tell Me, 'If You Just Get Off the Internet, You'll Feel Better'

The internet has been a part of my life for approximately 23 years. I’ve used it to communicate with friends, business contacts, paying bills, filling out forms, getting information, completing two degrees, shopping, and looking up information for Bible studies. I did all of this before I became ill.

What you don’t see is that Facebook has introduced me to a world of online support that has not been available within walking distance or a five-minute drive from my house. I have met people all over the United States and all over the world who have helped me to make sense of an illness that few have been able to understand and one that is ignored by our mainstream medical community. You don’t experience a trauma of this caliber and remain unchanged, and it is worse when those around you do not understand.

What I have found is thousands of people who have experienced similar bizarre symptoms, people who lost everything because they could no longer work, people who have tried every treatment available within their means only to still come up short and take their lives while the rest of the world silently passed them by.

What I have also found is stories of success against unbeatable odds, warriors rising, injustices being trumpeted through a megaphone across the land alerting the masses that “The Great Imitator” is alive and well while many turn their heads in ignorance. I have found valiant spirits who have the internal iron will and strength of fighting for an entire army.

So the next you tell me that I “would feel better if I just got off Facebook and the internet,” what you didn’t see is that it was an army of fellow warriors that helped a wounded soldier to heal from the battlefield scars instead of leaving her to die.

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 or text “START” to 741-741.

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5 Ways My Family Can Help Me Face My Chronic Illness

Since I developed multiple chronic illnesses, I have had people stand by my side and others who have turned their backs. Those who have continued to stand by me always wish there was something they could do, and they ask if there’s anything they can do.

Here are some suggestions of what you can do to support someone with a chronic illness:

1. Support them. Everybody needs support. But, those with chronic illnesses need a lot because they constantly have people telling them they are making their illness up or that it really isn’t that bad.

2. Listen to them. Sometimes all we need is someone to listen to us. Some days we just need to vent and get everything off our chests. Keeping everything bottled up isn’t good for anyone and the extra stress makes symptoms worse. Just listen to us and don’t worry about giving advice. Getting to talk to someone is sometimes better.

3. Don’t judge them. We are trying everything we can because we just want to feel better. Sometimes we have to do controversial treatments in order to get results. We are following what our doctors believe are the best options for us.

4. Be willing to learn about the diagnosis. Some people have never heard of our diagnosis. Ask questions. We are willing to explain it to you or provide you with sources that can explain what we have in simpler terms. I would rather be asked a million questions than have someone not understand what I’m going through.

5. Try to understand what I’m going through. I know there is no way for you to know exactly what I’m going through, but try to be understanding. I have to live with this illness everyday which causes anger, frustration, sadness, and anxiety. Be understanding of these emotions and don’t try to avoid them. They are going to come up, and we just need someone to help us.

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To the Parent of the Chronically Ill Child Asking, 'What If?'

I know you always want the best for your child. As a daughter with multiple chronic illnesses, I know you always ask, “What if?”

“What if I could have prevented that tick bite?”

“What if I would have chosen for you not to receive that one vaccination?”

“What if I could have prevented that surgery?”

“What if?”

As an only child, you had one chance to have the perfect child. You ask what you could have done differently so I would not have to deal with the symptoms of my diagnoses.

I want you to know that you never need to ask what if. None of this was your fault and if you could do it all over again, I would want you to do it the same way. Everything you have done for me is something I would never want you to change. You did your best to protect me which is something every parent would do.

You never stopped searching to find me a diagnosis which would later lead to a second, and to a third, and so on. You always believed me that something was wrong and would go to the ends of the world just to find a doctor. You cared for me on my best days and on my worst days. You supported me through thick and thin. You would be sure to always have extra vacation days and work extra hours just in case I had to go to the ER, to the doctors, or was admitted. You battled insurance companies time and time again to get me the treatment I needed. You have done all of this and so much more and I could never repay you.

I don’t want you to ever ask, “What if?” because every decision you made for me are the same decisions I would make for myself. These decisions were in my best interest and you never would have know any of this would have happened. Don’t ever blame yourself but know that I cannot thank you enough for the decisions you have made for me over the years.

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When They Wheel Your Child Back for Surgery

You smile and check the boxes on the paperwork. You sign and initial and hand over insurance information, paying attention to your parking space as you enter the hospital.

B7. We are at B7. Remember that. It’s important. I don’t want to get lost.

The nurses ask what kind of medications your child is taking, so you go through the list like marking off groceries, the inhaled, nebulized meds, the pancreatic enzymes, the vitamins and you spell them, one by one. You sound them out because the intake person is not familiar.

“It’s OK,” you say. “It took me years to spell them.”

There are invisible letters. It’s OK. It takes years. Invisible years. It’s OK. Years.

Any allergies? Yes, just one. Sulfa. Side affects? Yes, just a rash.

You plan with snacks and DVD’s, books and stuffed animals, the lovies that will comfort your lovie. You remember to pack the face mask and hand sanitizer, the wipes to clean the sides of the bed and wheel chair. You call your insurance provider to see what to expect in the mail next month. You are prepared in a million ways.

And then your child is on a bed that has wheels and side bars, a remote to move it up and down and scrunched up or spread out. It is magic to your child. She delights in the power of the thing. “Look what I can do?” Yes, look what you can do. You can do anything. Remember that. My dear. Anything.

The surgery nurse comes in and takes her pulse ox and listens to her heart, her breathing. She sounds good. Good. Good. Where did we park? B7. That’s right. B7. She’s allergic to sulfa, you repeat. OK. Good.

Your child is dressed in hospital pajamas that are cheery. They are a spinoff of something Disney but generic. Like “Little Mermaid,” but with a brunette instead of a redhead. B7. Don’t forget. Brunette Ariel and B7.

The anesthesiologist comes in. He asks the questions you know by heart. You run through the list of prior surgeries and procedures and sense for a moment a look of sadness in his eyes. He knows women like you. Mothers like you. They are all the same, listing like groceries, their child’s procedures. G-tube placement, endoscopy, bronchoscopy, blood transfusions. Milk, bacon, bread. Zenpep, Pulmozyme, Albuterol. Just a list. Just groceries. Sad groceries. Required to live.

She’s allergic to sulfa. She’s allergic to sulfa. B7. We are parked in B7. He is young, maybe too young you think. Did he really have time for med school and residency and his tie is Winnie the Pooh, good God, is he really qualified? Winnie the Pooh? B7.

The nurse comes. She calls you “Mommy.” She says, “OK mommy, we’re going to take her now.” And it hits. It hits. It hits. Tears well up but you can’t. Just think B7. Repeat B7. We have to find our car. Your child is wearing scrubs like a guest star on Grey’s Anatomy, and a little hair net like a cafeteria worker serving burritos to 7th graders or maybe a surgeon. But she’s 11. She’s only 11, you want to scream. Please, please doctor with the Winnie the Pooh tie, please nurse, please valet. Please let her be OK. Promise it.

You follow the gurney. You are that parent. You ask, “How far can I go?” They are used to moms like you, moms that don’t just wait in the room. They know you are the hallway mom who paces and insists on knowing exactly how long it takes. They are kind. They say, “Just to these doors mommy.” They call you mommy. They know. They are kind. They have done this before. They are mommies, too. You have done this before.

You look at your baby. She is the same face she was when she entered this world. She has the same eyes. She is the same. The exact same.

You tell her, “I love you. I love you. I love you.”

There is a risk. B7. B7. We are parked at B7. She smiles under mask. You hold back an avalanche. You hold it. B7 dammit. B7. She’s allergic to sulfa. The doors open. Please let Winnie the Pooh be qualified. Please God. Please.

She is through the doors, a woosh. No entry. You stand there unable to move. You cannot follow.

Your feet follow the arrows on the floor. Yellow arrows taking you to the waiting room where it is now your turn to wait. The arrows do not point anywhere else. So you follow. You do what you are told.

There are coffee smells and others waiting. “US Weekly” and “Newsweek” and “Time Magazines” are there to distract. It’s a trick, you think. But you do it anyway. You read an article about Madagascar.

How far is B7 from Madagascar? Would we get lost there? Could we find our way home? Your child loves lemurs. Lemurs are native to Madagascar. B7. Please God. Don’t let us forget where we are. Please God please. Let Winnie the Pooh know what he is doing. Let him know h0w we get from Madagascar to B7. It will all be OK.

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