If You've Ever Wondered Why Parents of Children With Chronic Illness Spend So Much Time on the Phone

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I’ve recently had several billing problems with my son’s specialty pharmacy. This is not uncommon in rare or chronic diseases. Pharmacy problems. Insurance problems. Phone calls. Documentation. Repeat phone calls. Sometimes I feel like I spend all day on the phone or computer (on some days, I actually do).

To give an insight to those who don’t live in this world, and in an effort to provide an example of companies offering poor customer service, here is a transcript of my morning. Note that this is the fourth such call this month.

I dial and go through several prompts to attempt to contact the billing department.

On hold for eight minutes. [Not too bad considering my last call started with 20 minutes on hold.]

This is XXX in billing. How can I help you?

[Since I’ve already spent three hours this month on this same issue, detailing it every time, sitting on hold (generally 10-20 minutes), getting transferred and explaining the issue again, sometimes getting cut off and others being told something different each time, I thought I’d try to go a little higher up the food chain. All I’m trying to do is get them to bill my insurance for a month’s worth of medication I received over three weeks ago.]

Can I speak with a billing manager please?

I’m in billing.

Can I speak with a billing manager please?

I’m in billing. I can help you the same way as a billing manager.

We’ve tried to resolve this problem several times, with phone calls each lasting an hour or more, so I need to speak with someone who can resolve it and not have to repeat myself and be transferred.

OK, let me transfer you.

On hold for two minutes.

Thank you for calling. Are you a new patient, existing patient, or provider? Please press 1 for new patient, press 2 for existing patient, press 3 for provider.

I press 2.

What is the phone number including area code associated with this account?

XXX-XXX-XXXX

Please hold for our next available patient care advocate.

On hold for five minutes.

Thank you for calling. This is XXX in billing. How can I help you?

Can I speak with a billing manager please?

I’m in billing.

Can I speak with a billing manager please? We’ve had a repeated problem so I need to speak with someone who can resolve it and not have to repeat myself and be transferred.

OK, let me transfer you.

On hold for two minutes.

Thank you for calling. Are you a new patient, existing patient, or provider? Please press 1 for new patient, press 2 for existing patient, press 3 for provider.

I press 2.

What is the phone number including area code associated with this account?

XXX-XXX-XXXX

We’re sorry, your order cannot be completed through our automatic refill service. Please hold for our next available patient care advocate.

On hold for two minutes.

Hi, this is XXX in billing. How can I help you?

Can I speak with a billing manager please?

OK, let me transfer you.

On hold for fifteen minutes.

Hi. This is XXX and I can try to help you. Can I get some information from you so I can send information over to them when I reach someone?

Sure.

Do you have an account with us?

Yes.

Is this for you, your husband?

My son.

Can I have his last name, please?

XXX

Can I have his first name, please?

XXX

Can I have his date of birth, please?

XXX

Please verify your zip code?

XXX

Can you please wait a moment while I get the billing department on the line?

I’ve spoken to several people today in the billing department. What I need is a manager who can resolve this issue.

Well, I need to get them on the line first to get a manager. What is your name?

Melissa Hogan.

On hold for five minutes.

Ms. Hogan, I’m just checking back. I’m waiting for a rep to pick up so I can get a manager for you.

Thank you.

Do you still want to hold or can I give you a number that you can call back?

I’ve been redirected to the same prompts several times already this morning and spent 40 minutes on this call with no resolution, how else do I resolve this? Do you have a direct number of anyone I can reach?

No. I just have a number for billing.

Is it XXX? If so, I already have that number.

I just have the same number you have for billing.

I spoke last week to a lady named XXX who is a resolution team lead, can you
connect me to her?

Let me find her on the phone list. [On hold for one minute.] OK, yes, she is a manager. Let me try to connect you.

On hold for one minute.

Ms. Hogan, she is not answering, but let me try the other line for a supervisor. Can you hold please?

Minute 42:37 on this call.

On hold for five minutes.

Ms. Hogan, I apologize. I’m still waiting for a supervisor. Do you want to continue to hold?

I have no choice. This happens every time I call. I’m 48 minutes invested now. Sure.

OK, I’ll keep trying XXX as well.

On hold for nine minutes.

Hello, how can I help you? [So quiet, I can barely hear it.]

I can barely hear you. Is there a way to turn up the volume?

No. [Unintelligible] no volume.

OK, I may need you to repeat things. Are you a billing manager?

No. [Unintelligible]. Management.

I’m sorry, I couldn’t hear you. Are you a billing manager?

No, my name is XXX. I am a member of management.

[I explain the entire debacle, holding back the choice words floating in my head.]

I have in the records that a request was submitted last week for it to be billed. I can reach out to the representative who submitted to the request and check on the status.

Do you not want the money for the $35,000 worth of medication sitting in my fridge? You can “reach out to the representative?” When will this be billed, seeing as how I’ve had this medication for three weeks?

I don’t know what happened before last week. I have in the records that a request was submitted last week for it to be billed. All I can do is reach out to the representative who submitted to the request and check on the status.

And how will I know when this has been billed? My son’s medication bills out at almost $400,000 per year and I’m not going to order any more until things with you get resolved, if ever.

I will reach out and see what is going on. Let me confirm the information I have. Is your insurance XXX?

Yes.

I have your phone number as XXX. Is that where I can reach you?

Yes.

I will look into this. Is there anything else I can help you with?

No. [Hell no.]

Thank you for calling.

You’re welcome.

Minute 58:59. [Whew, I made it out before an hour! But by past experience, this will not be the last call.]

If you’ve ever wondered what parents of children with rare or chronic illnesses do all day, or why they often don’t have time for coffee, or can’t put their children in time-consuming sports and other activities, remember this post.

We can spend a ton of time on the phone about our child’s health care.

And then we blog about it.

A version of this post first appeared on SavingCase.com.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Priceline Pauses Distasteful Adoption Ad in Response to Mom’s Blog

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Ginger and her son

One mom’s blog post has convinced Priceline.com to pause its distasteful adoption ad.

On Friday, Mighty contributor Ginger Newingham, who blogs at “Our Moments Defined,” wrote a post in response to Priceline’s commercial that premiered during the Super Bowl. In the ad, a couple is able to travel to Eastern Europe (because of Priceline) to meet their potential adoptive child, who ends up being a grown man. “The parents express relief that they were able to meet him,” Newingham wrote. “They obviously made the choice not to adopt him.”

Five years ago, Newingham and her husband adopted a boy whose file said he “had social delays.”

“He wasn’t as his file had described,” she wrote, “but nevertheless, he was our son.” She now knows he has autism, Tourette syndrome and a sensory processing disorder.

The Priceline commercial hit too close to home for her to find it humorous:

Actual children are being left behind in orphanages because their paperwork doesn’t match up with their needs… I realize it was made to be funny, but I’m struggling to find the humor. This could have been my son’s story.

Newingham asked Priceline to pull the ad, and invited others to #shouttogether to get the company’s attention. She started the hashtag, a Change.org campaign, urged readers to down-vote the ad on YouTube, and asked adoptive parents to post photos of their children on social media.

It worked.

On Monday, Newingham wrote a followup post, saying the director of communications from Priceline personally called her to listen to her concerns. Priceline then released an official statement:

In light of recent conversations surrounding priceline.com’s Baby ad, we’d like to clarify that we certainly didn’t mean to offend. At priceline.com, we are committed to being there for our customers, no matter what life journey they are on. The humorous scenarios depicted in our new advertising campaign are not meant to reflect reality. We took a comedic approach to dramatize the “go/no go” travel decision moments many of our customers face daily. Based on your feedback, we have decided to pause the use of the Baby ad to evaluate messaging. Thank you for reaching out to us. 

Rest assured that we have heard your concerns about the message and content of this ad and we are taking them seriously. 

Newingham credits everyone who got behind her for this success. She wrote:

I was passionate in my stance and motivated in my defense for orphans. I thought a few people might read my post and share their feelings with Priceline.

But you. YOU. You all stepped up and ran with the campaign. I may have been the spark, but you caused the fire. You turned up the heat. You shouted louder than I could have imagined. You shared, you commented, you posted your adoption pictures. You made phone calls, you signed a petition, and you informed your friends and family. You stood in agreement that the ad was distasteful and should no longer be circulated.

And together, we accomplished our goal.

Newingham was surprised by how quickly the campaign gained traction, but not at all surprised by how passionately adoptive families reacted. She told The Mighty in an email:

We are families who have (in many instances) completed years worth of paperwork and interviews before even being allowed to meet the children with whom we fall in love. We are the advocates and supporters of our special needs children and our children from hard places. 

When we decided to #shouttogether, there was passion and love in our voices. And together, those voices were heard. This campaign has reminded me that one voice and one story really can make a difference. 

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What This Special Needs Mom Really Means When She Says ‘I’m Fine’

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I can’t tell you how many times I’ve uttered the words “We’re fine” in the last three years. To family, friends, neighbors, co-workers, you name it. With a son who has major medical needs, a demanding full-time job and another preschool-aged child, I’m often asked (out of kindness and curiosity), “How are you? How do you manage everything?” Almost instantaneously my answer is, “We’re fine!” or “I’m good!” This has become my standard refrain, all the while, laughing at myself on the inside.

Because the reality is, I don’t think I’ve been “fine” for a long time now. How could I be? 

How can I be fine when I have no warning when my child may need “routine” brain surgery (and by the way, ask any parent who’s had a child on the operating table, for any reason, if the word “routine” does anything to lesson their terror or the images of catastrophic outcomes that flash through their minds)? But I digress…

How can I be fine when my 2-year-old has had four surgeries, countless procedures and scans, and spent more than 10 percent of his young life in a hospital bed?

How can I be fine when there is no predicting when he will be back in one of those hospital beds, with me praying in sync with a ventilator, equal parts terrified and hopeful of what the next day may bring?

little boy wearing green shirt

But the thing is, as painful as all of this can be, in many ways, I am fine. Despite the fear, the exhaustion, and the never-ending what-ifs, our lives are filled with unimaginable love and laughter; the ability to revel in each beautiful moment that we have been given.

I can’t imagine a family more aware or grateful of the joy that each day can bring. Every milestone is celebrated with uninhibited joy and exuberance. Every time those little arms squeeze my neck, that moment is the only one that matters. 

So what do I want you to know? 

There is no way I can possibly be fine. And yet, I am.

Black and white photo of mom sitting and holding her two kids

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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18 Things People With Chronic Illness Wish They Knew When They First Experienced Symptoms

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A journey with chronic illness typically begins when a person first starts experiencing symptoms, and it can be a confusing and uncertain time. There’s so much to learn not only about your health, but about working with doctors, managing friendships and finding the support you need.

We asked our Mighty community with chronic illness what they wish when they first started experiencing symptoms. If you aren’t feeling well, please consult a doctor; but we hope what you find below will help you as you start this process.

Here’s what they told us:

1. “It is OK to grieve who I was as I figure it who I now am.” — River Nuri

2. “Pushing myself was only going to make it worse… And it’s OK to let go of people who are causing more stress.” — Ally Putvin

3. “Save more money! It takes a toll on finances when you go down to one income if you are forced to quit a job due to [your condition].” — Marcy Wolfe Ringstaff

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4. “I wish I had known that although it seemed like the end of the world, it really wasn’t. I was strong enough to make it through the hard times with the help of my family and friends.” — Mary Bridget

5. “I wish I would have known I wouldn’t be able to do a lot of the things I enjoyed. So in hindsight, I would have rode every roller coaster humanly possible, swam in the ocean, and any other fun activity I always said I’d do and never did and don’t know if I’ll ever do again.” — Danielle Myers

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6. “I wish I had known that fatigue is not normal. I pushed through it until I collapsed and could barely get out of bed for a year because ‘everyone’s overworked and tired these days.’” — Tammy Byrnes

7. “Not every doctor will be an ally. I have to leave the doctors who aren’t a good fit and seek out the doctors who truly ‘get’ me and my medical situation.” — Lisa Sciandra

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8. “It’s OK to ask for a second opinion. I wish I had known it’s OK to do your own research and to stand up for yourself, even to medical staff.” — Tia Borkowski

9. “I wish I had known that there was something seriously wrong with my body and that trying to ignore the symptoms and act like everything is perfectly fine was not the way to get help from a doctor. Unfortunately, by then, it was too late. If something seems like it isn’t right, don’t be afraid to call the doctor.” — Meghan Bayer

10. “The ones who truly care about you are there when you need them, no matter how stubborn you get. You can lean on them for support.” — Melanie Louise Voll

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11. “I wish I had listened to my instinct that things were not right. I wish I had not trusted so wholly in the knowledge of my doctors, that I had known their knowledge is not all-encompassing. I wish I had known better how to self-advocate, and how to pursue answers for what I felt was going wrong. I suspected lupus many years before my symptoms became worrisome enough that I felt more driven to find answers. Looking back, I wish I had known I was right to be concerned about my mild symptoms. I wish I could have believed in myself sooner.” — Julie Pruitt

12. “It’s actually the best thing to put my own needs first. Even if I’m ashamed of them because they’re not the same as those of the people around me. Some of them can’t and some of them won’t understand anyway.” — Dymphna Bakker

13. “It’s OK to drop bad doctors and get the help you need. Doctors don’t know everything. Trusting in them 100 percent can be hazardous to your health.” — Kathy Lee

14. “I wish I knew that eventually this pain would make me a stronger, wiser person.” — Sara Cohen

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15. “Patience becomes everything. Patience with your doctor, patience with the emergency room staff, patience waiting for the right combination of meds, patience waiting on tests and the results of said tests, patience with those that don’t understand and most of all, patience with your own body. My mother always says to take a deep breath when in the hospital for checkups or longer stints, that there is a reason we are called ‘patients.'” — Suzi Higgins

16. “I wish I had known that it was possible to get sick and not get better. It would have saved me so much guilt and fear when people asked me why I wasn’t better yet.” — Brittany Postle

17. “I wish I had known how to find others like me right off the bat. I didn’t meet anyone else with my illness until I’d been diagnosed for three long, slightly depressing years.” — Laura Vago

18. “Although my life will never be quite the same, this doesn’t mean it can’t still be great.” — Holly Loughton

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If you have chronic illness, what do you wish you knew when you first began experiencing symptoms? Let us know in the comments.

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When Friends Offer ‘Alternative Treatments’ for Your Child’s Health Issues

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When I posted about my son’s double ear infections on Facebook, I think I was looking for a few words of encouragement from a select audience who should have already known these things about my son:

  • He was born with bilateral hearing loss and has abnormally small ear canals;
  • He wears a hearing aid in his left ear; his right ear is currently recovering from surgery (to be aided or not, remains in question);
  • He has had three ear surgeries in his 6 years of life;
  • He had a cholestetoma removed from his right ear during a five-hour surgery last summer;
  • Because of the cholestetoma, ear infections are no small matter for my son;
  • He is currently under the care of an ENT (ear, nose and throat doctor); and,
  • He has sensory integration issues, with oral defensiveness; taking medication causes my son great anxiety.

I believe those same Facebook friends should have also known these key facts about me:

  • I’ve spent the bulk of my time over the past six years caring for my son;
  • I probably know a good deal more about ear health, structure and anatomy than most people;
  • I’ve been feeding my family organic food for 16 years;
  • I am a certified yoga teacher and use alternative medicine whenever possible; and,
  • Because of concerns over returning cholesteatoma and further erosion of his middle ear bones, we have to play it “safe” and use antibiotics.

I was advised on Facebook to try sprinkling garlic on my son’s food and to start buying organic food because it was said to clear up ear infections in the advice-giver’s son.

This comment (well-meaning as it was) made me angry, and then it made me cry.

I realize I’m sensitive right now. This week, my son couldn’t hear out of his right ear and couldn’t wear his left hearing aid, leaving him without access to sound. He couldn’t go to school, and I’ve had to try hard to get him to take an antibiotic. This week, I also drove my fevering son four hours round-trip during 10-below temperatures to see his surgeon, who basically told me there is no good way to know whether cholesteatoma has returned (shy of lifting up his ear in the operating room again for a “second look” or perhaps an MRI in six months). So right now, as much as I’d like an “easy” fix, I can only “wait and see.”

I have no control, and no amount of garlic will change that fact.

Facebook friend, I realize that you were only trying to help with your suggestion of garlic. However, it’s probably best to stick to the basic “tea and sympathy.” Instead, you might simply try offering some empathy. I really take comfort in those Facebook friends who provide comments like these:

  • So sorry you’re dealing with this again.
  • Hugs and prayers.
  • You guys are so brave!
  • Hoping he feels better soon.
  • You’re an awesome mom, Heidi!
  • Stay strong!
  • Praying you both get a good night’s sleep.

And after seeing comments like the above, I know I’m not alone. Maybe all I really need during those times of worry and heightened stress over my son’s fragile health is to know my friends are standing with me.

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Follow this journey on Mother Imperfect.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Professor Asked If People With Disabilities Would Rather Be Able-Bodied

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As a senior in college graduating this May, I have had the opportunity to take incredible classes on varying topics throughout my four years of school. In one of my courses this semester, I recently participated in an interesting class discussion on a topic I rarely ever discuss in a classroom setting: disability.

In the course of our daily discussion, my professor brought up disability theorist Robert McRuer, who has written several fascinating pieces on ability and on the representation of ability/disability in the media. The piece my professor was discussing is entitled “Compulsory Able-Bodiedness and Queer/Disabled Existence,” and it discusses the ways in which people with disabilities and members of the LGBT community share certain stigmas because both are groups that do not fit into certain social standards of able-bodiedness and heterosexuality, respectively.

In this piece, McRuer discusses what he considers to be one of the major struggles of living as a person with disabilities — the standard of “compulsory able-bodiedness” that upholds able-bodiedness as not only a social standard, but as a social ideal all people should reach. And if they cannot reach it, then they should at least spend their lives trying to reach it. He writes:

“[Our] culture… assumes in advance that we all agree: able-bodied identities, able-bodied perspectives are preferable and what we all, collectively, are aiming for. A system of compulsory able-bodiedness repeatedly demands that people with disabilities embody for others an affirmative answer to the unspoken question, Yes, but in the end, wouldn’t you rather be more like me?”

My professor brought up this point, and then posed the question to the class, asking if they also felt all people with disabilities likely wanted their disabilities to go away, wanted to live a life of able-bodiedness. The answer, to my surprise, was a resounding “yes.”

A student in the class raised his hand and began telling the story of one of his family members, who lives with a disability. He mentioned how many hours of surgery and pain she had been through and concluded she must wish she did not have a disability because of all of that pain and all of the things she cannot do because of her disabilities. Several of my classmates agreed with him.

That was the moment when I decided to raise my hand.

I very rarely discuss my disabilities when I am at school, mostly because it doesn’t ever come up and partially because, admittedly, I do not want my professors and classmates to view or treat me differently. In this conversation, though, I chose to speak out, because I find this opinion — that all or most people with disabilities wish they were able-bodied instead — to be not only widespread, but also potentially very harmful.

My disabilities have brought an incredible amount of pain to my life throughout the past 10 years. Unfortunately, that’s what chronic pain is — painful. Like my classmate’s family member, my disabilities have placed me in the hospital for hours on end and at times have prevented me from doing the things I want or need to be doing. They have cost me a significant amount of time, money and energy. All of these things are true, and it would seem that by virtue of these things being true my disabilities would be something I would resent or hate about myself. It would seem almost obvious that, if given the choice, I would — anyone would — choose to live without pain, without surgeries or medical expenses, and without boundaries.

But this is not what I would choose.

My disabilities are a part of who I am. Because of this, I have learned it is counterproductive to harbor negative feelings about them or wish they would just go away. But, more than that, my disabilities have helped to shape me into who I am. Living with pain has taught me to appreciate moments of happiness that much more; living with the boundaries created by my disabilities has taught me how to break down barriers and fight for the things I want. Without my disabilities, I wouldn’t have my incredible service dog, Simon, in my life, or the hundreds of Facebook friends I’ve met in online “spoonie” groups. Being disabled has taught me about empathy, compassion, advocacy and accessibility, and it has shown me the importance of friendship, love and listening.

My disabilities have brought me pain, this is true. But it is equally true that, in their own way, they have brought me happiness as well. And because of this, I just had to speak out.

I just had to tell my classmates, and anyone else who would listen: Actually no, I wouldn’t rather be like you. I would rather be who I am — disabilities, pain, happiness and all.

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Ariana and her dog.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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