coming of age with chronic illness and mental health book

The teen years are hard. Going through your teen years with a chronic illness like diabetes can be even harder for everyone involved – both the teen and the parents. There is so much going on when you’re growing up, even before you add in the factor of chronic illness. But it’s oversimplifying to say the teen years are hard, that they are rebelling. Yes, maybe this is the case, but often there is so much more going on in life.

 

Because of hormones, diabetes became more of a roller coaster for me in my teens and it became more of a roller coaster for everyone around me. Because the frontal lobe still developing in teens, they may be forgetful, make poor or “interesting” choices, have more apparent attitudes, become defiant, are still working on the ability to recognize and understand when emotions comes into play and more. This all adds up.

It’s of course not fun for the teen, but at least for me, I felt like no one cared about me anymore because I was no longer the “cute kid with diabetes.” I was an angsty teen with diabetes who had different needs. Then it’s not fun for the people in your life, especially your parents or caregivers. But a lot of the world and the healthcare community overgeneralizes, points fingers, tells you to just wait it out, etc. But that’s seven years of missed opportunities and the possibilities of physical, mental and emotional damage.

mindy bartleson

You’re told it gets better.

Yes. It does. But it takes time. It can suck in the moment, but we just get told it gets better. I think as adults, we can forget what it’s like. That’s why many teens don’t relate (well, at least I didn’t) to adults. The rose-colored glasses become way too strong for adults. We forget it can suck for teens, and maybe they just need us to admit it. We forget it’s important to balance the positive and negative so we can still get through it.

When I was 22, I saw this happening to my perspectives on experiences. I was applying a rose-colored lens to a lot of things in my life already. I was starting to say all the bad things I went through were worth it or just ignored them completely. But that’s not life, especially in the moment.

I’ve always wanted to be an author, but to be perfectly honest, I never saw myself writing a nonfiction book, one about my experience with chronic illness and mental health. However, I did just that. I did that with the goal to finish all of the content before I turned 24 last fall so that rose-colored glasses didn’t impact all of my views on my experiences. I’m aiming to balance the positives and the negatives of growing up in general, but also with chronic illness and mental health along for the ride.

coming of age with chronic illness and mental health book

I’m pursuing self-publishing and crowdfunding this project.

I’ve always wanted to be an author, but I always daydreamed and aspired to write fiction. I actually never planned on starting a blog (look at me now!) either. I’m chasing this dream and aiming to make it a reality – with a few twists.

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. To help this book get published, you can visit the crowdfunding page to learn more, back her project and help spread the word. You can also follow Mindy on Instagram, Twitter, Facebook and her blog, “There’s More to the Story.

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I was diagnosed at the age of 9 and was very sick. My blood sugars were in the 700s and rising. I am 27 now and I am not going to lie, diabetes has put me through the ringer more times than I can count. From feeling sorry for myself, having depression and almost dying several times, I have stood up and found my strength and hope living with this chronic illness.

I have decided to make my voice heard and start spreading the word and making an awareness of this disease. I will not go down without a fight. When someone asks me a question I educate. I take advantage of the moment. Diabetes type 1 is autoimmune disease, which means my body attacks itself. I cannot eat without an injection of insulin which a normal body produces.

I am constantly counting carbohydrates and sugars. I check my glucose before I eat, I have a mental argument with everything I eat: “Is it worth it? I will have to give myself insulin.” When my glucose is low I have to act fast to get sugar into my body before I faint, which has happened plenty of times. When my glucose is high I have to get insulin into my body or have a visit to the emergency room. I get sick more than a person without diabetes. A cold could turn into something more serious, I can catch any virus faster and more often.

That’s only a little explanation I can give about type 1 diabetes. I could go on for days. I spend a lot of my time on spreading awareness because that is my biggest weapon in finding the cure. And to everyone out there battling a chronic illness, you are not alone! Remember that – a lot of people are fighting the same battle. You are a warrior and you will still rise.

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Last weekend we made a visit to the college my son will be attending in the fall. It was “Accepted Students Day” and the school had kindly arranged tours and a gym full of tables representing all of the services available to the students.

As we toured the engineering labs, my son stared mesmerized at the robots doing tasks students had programmed them to do and machines testing tensile strength and that sort of thing. I stayed at the back of the group, having no idea about anything that our tour guides were saying. I was only waiting to visit the student services tables.

When finally we got to the gym, I went to the Student Health Service table, the Residence Life table, The Disabilities table — only to hear the same thing at each one, “We don’t provide support for students with Type 1 Diabetes.”

What? How can this be? This is a large, well known university. Surely I am not the first parent who has worried about what a 19-year-old is going to do at night regarding his blood sugars. Surely I am not the first one to wonder whether a kid with a chronic condition and sensors which alarm all the time should have a roommate with a similar condition or a roommate without. Surely I was not the first mother to worry about whether my son might go low in the night and not wake up to correct his blood sugar, who might have a seizure — or worse!

Of course, like many parents of children with a chronic condition, I am not unfamiliar with a lack of services. Over the years I have sought out distant services for my son, started services myself, educated teachers and coaches, administrators, camp counselors, etc. But this time is different. This time I will not be a phone call away. This time I cannot talk to each professor, residence advisor or sports team organizer. This time, I will be the mother of a college student who is far away and on his own for the very first time.

Yes, he has gone to camp overnight — but it was diabetes camp. And yes, he has gone away on school trips — but I have educated the teachers going with him and they have been willing to get up in the night to make sure he remembers to test himself at several hour intervals. Once, when he went away to a conference, I had to wake up one of the adults who was on the trip since my son was not responding to my phone calls to remind him to test.

I am not a helicopter parent. I imagine some people think that. What people don’t know about Type 1 diabetes — except people who are parents of children with it or who have it themselves — is that Type 1 is a 24/7 job. Blood sugars can go high or low at any time based on what you have eaten, how much you have exercised, whether you are sick with a cold and whether you remembered to give yourself insulin or not the last time you had a snack. There is no vacation from Type 1, no night when you can just go to sleep and forget about the whole thing.

There is a syndrome which every parent of a child with Type 1 Diabetes knows about and no parent wants to think about. It is called “Dead in Bed Syndrome.” This is when someone, often a child, goes to bed, experiences a very low blood sugar in the night, does not receive remediation (sugar) and dies in his or her sleep.

This is what I try not to think about in regard to my son going to college. I believe I have prepared him to study well, do his own laundry, even to cook a bit for himself. But waking up at night to test his blood sugar? This is a place where I am an utter failure. I am trying every night to get him to remember to set his alarm. I am here to urge him to wake up when his alarm does not wake him and to stand at the door of his room until he tests his blood sugar and corrects himself if he is too high or low. But still he often does not follow through.

We have four months until college starts. Do I pull the plug on this whole thing if he does not start to take more responsibility? Do I urge the college to put something in place to support my son and students like him? Do I let him go and call him every night? Or do I let him go and just live with the worry?

What would you do?

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Today, I graduate with a Masters degree. Through the year and three months it took me to complete the program, I dealt with some heavy stuff. I was open about that stuff. In turn, some people were incredibly supportive and receptive to listening to the stuff.

graduation tassel, ticket to ceremony and insulin pen for diabetes

However, part of me feels like the struggles I went through just to be heard in academia (and in other parts of my life) when talking about my chronic illnesses/disability accommodations were dismissed as being dramatic or martyr-like. At times this was really hard for me and made me feel like I wasn’t worthy of being in a graduate program. Since completing the program, I’ve wondered if anyone is proud of me or if people realize how difficult this was for me to accomplish. I know that’s my anxiety and depression talking – but nonetheless, those feelings are there.

I am 100 percent an advocate for the struggles of chronically ill and disabled students being heard at a systemic and interpersonal level. However, what I realize on this big and important day is that I don’t need anyone to validate the importance of this achievement other than myself. So, I wrote a self-appreciation letter.

Dear self,

You completed a heavily writing intensive, fast-paced Masters program in a year with the following:

– Two autoimmune diseases
– Two chronic pain conditions,
– Severe fatigue
– Anxiety and depression
– Financial instability and stress, which is largely attributed to the rising costs of life-saving insulin and a high deductible health insurance plan
– Unstable living conditions
– Consistent doctor and physical therapy appointments
– No caffeine (to be honest, this is the most impressive)

Because of the following:

– Your hard work
– Your family
– Supportive mentors and friends
– A vocal disabled/chronically ill community that motivated you to acknowledge that you are capable and worthy of accomplishing your goals

Dear self,

If you need to use a cane at graduation, please don’t talk yourself out of it. Anyone who thinks you use a cane for attention doesn’t understand the nature of an inconsistent health condition. Maybe they never will. Maybe that’s OK.

Dear self,

You are allowed to be proud of yourself even if your struggles aren’t recognized. This is big. Don’t convince yourself it’s not big. Enjoy your commencement and accept all the “congratulations” even though you haven’t found a job yet. You can be humble every other day of this year. Not today.

Dear self,

You are an equal. Your accommodations enabled you to succeed and having had them does not mean you’re a failure, or any less of a hardworking student. You don’t need to keep justifying it to yourself.

Dear self,

I am so proud of you.

That’s all that matters today.

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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.

An open letter to Congress, from a person with type 1 diabetes who struggled without health insurance for 13 months:

Dear Congress,

I’m sure you and your staff have been flooded with opinions on the Senate’s vote regarding the Affordable Care Act (ACA), so let me go ahead and add to the pile. I have lived in your district since February of last year, moving from Atlanta, GA to take a job. I’m lucky to be in a place now where I have wonderful healthcare provided by my employer and I am tremendously grateful for it. But for 13 months, before the Affordable Care Act and its provisions about coverage for people with pre-existing conditions was in place, I didn’t have health insurance. No amount of money could have gotten me coverage, because I have type 1 diabetes.

If you’re unfamiliar, type 1 diabetes is an unpreventable, incurable, autoimmune disease. My own immune system attacked my body and killed off the cells that create insulin, the hormone that breaks down food into energy for our system. There is nothing I did to get it, and nothing I can do to make it go away. Every day requires the utmost attention to keep myself alive, and I rely on our healthcare system to make sure I can do so.

 

Does the Affordable Care Act as it stands work for everyone? No. Do insurance and pharmaceutical companies, for-profit entities whose sole charge is to make money, need to be held accountable for price gouging and continuing to increase cost of private coverage? Yes.

But taking away access to coverage for our most vulnerable populations is not only ethically deplorable, but financially unsound. Taking away preventive and maintenance care for people who are already ill drives us to emergency care, stacks of bills we cannot hope to pay and life on a stressful, precarious edge where it is a constant choice between paying for food or rent or paying for medication, because paying for both isn’t always possible.

I’ll be frank – living with an unpreventable, incurable autoimmune disease where I am dosing lethal medicine for myself every day without any kind of medical oversight or help? It’s terrifying. It is only through others’ kindness and the ferocity with which my mom fought for my well-being that I survived.

I rationed insulin. I bought it a bottle at a time, $150+ out of pocket. (This was back in 2009. Now one bottle costs upwards of $300-$600). It should have lasted me about a week; I would make it last 10 days. I purposely kept myself on the edge of OK because I couldn’t afford anything else. I checked my blood sugar as little as possible, and sometimes less than that, because blood sugar test strips are one of the most marked up medical commodities on the planet – they cost less than a penny to make but can cost more than a dollar per strip.

I had no back-up plan. When my insulin pump broke at 2:00 in the morning, I didn’t have any other way to administer insulin, because I didn’t have a doctor who would’ve prescribed me insulin pens that I could’ve kept stocked in an emergency. I ended up in the emergency room, and later with a several-thousand dollar bill I could not pay, while I waited for my replacement insulin pump to be sent to me. I would have died within hours had I not gone for help.

I was in my first job out of college. It was the dreaded year of 2009, so no one – not even the local Starbucks – was hiring. My job was classified as an internship, so they didn’t have to provide benefits. When I started, I made $800 a month. I slowly inched my way up to $1,600 a month. My rent was $600 a month. That emergency room bill was $2,600. When the hospital’s collection agency started calling my job, I was regularly reduced to tears in shame and out of fear. I did not know what to do.

I spent a lot of time in my job’s hallway, crying, on the phone with various medical providers. The company I worked for was German, most of my colleagues were German, and being from a country where this never would have happened, they didn’t quite understand what was going on. But of course I should be able to get the medication that keeps me alive! We’re a first world country, are we not?

My insulin pump supplies cost about $900 a month that I knew I couldn’t pay. I spent seven hours one day trying to negotiate with Lilly, the company who made my insulin, about how I could qualify for their assistance program. Because I had a job, even though I made what I did, I wasn’t eligible. I asked the woman on the other end of the phone how it would be helpful for anyone if I were unemployed; I told her I was trying to get on my feet. She said there was nothing she could do.

When I went to my local state health clinic in Georgia to see if there was any way they could help, they told me the only care they could provide as a woman over the age of 18 was prenatal. I asked if they could provide care for my type 1 diabetes if I were pregnant. The clinic worker shrugged – “I guess that would make sense because we would need to make sure the baby way OK, so you would need to be OK.”

When I ended up with bronchitis that first winter out of school, it was only through the kindness of a doctor who kept my visit off the record and a technician who turned her head the other way when I was given an off-the-books chest x-ray that I was able to get the care I needed. Being “normal-people” sick on top of an autoimmune condition? Those are the random things that tend to take us out, people asking later, “But what happened? Wasn’t it just bronchitis?”

On July 1, 2010, I was made full-time at my job. On October 1, 2010, my three-month grace period was up, and I was sent an identification card for my very own health insurance plan. My coworkers baked me a cake. My mom sent me flowers. Every friend congratulated me. I cried a lot those first few days. I hadn’t realized at the time just how much terror I had carried with me for 13 months, never knowing around what corner I was about to get pummeled with a new bill to deal with, a new sickness to navigate alone, a new emergency in the middle of the night I could not get help with.

When you’re living with a chronic disease, as so much of America is, you must have a safety net. You cannot get by without it. And if our Senate votes to take that away, it would crush me.

Working for JDRF, the world’s leading organization for type 1 diabetes advocacy and research, means I will always have the best possible coverage for my type 1 diabetes – I could not be more thankful for it. But I know how many people will be caught just like I was caught, and that is not OK.

I implore you to take a more holistic look at what we’re doing here. We cannot repeal key parts of the Affordable Care Act without having an adequate replacement. Doing so could send millions of people like me back to a place of fear, financial peril and sickness that could each be managed with proper care.

I appreciate your consideration and your help. I know you work hard on behalf of your constituents and I am grateful that you will work hard for us on this as well.

This post originally appeared on Lala Jackson.

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Thinkstock photo via izanbar.


I’m in Barbados with my best friend, riding shotgun in her mom’s Jeep, guiding my hand and arm to ride a wave of air out the window as we jet down the highway from the west coast back to her family’s house in the south. It’s the last day of my holiday stay and we’ve been chatting about life. I’ve known Marielle since 2004. We met right at the start of our freshman year at the University of Miami and there’s not a lot we haven’t covered, but getting older and starting to approach all of the big life things that come with it has turned our tone a bit from our normal jokes and singing.

“This is awful to ask,” I say, “but is Down syndrome hereditary? I realize I don’t actually know much about it.”

Marielle’s little sister Natalie was born with Down syndrome and, for as long as I’ve known Nats and likely for the full 27 years of her life, she’s been the the most glitter-and-pink-obsessed person I’ve ever met. Their uncle Eddie had Down syndrome too, until he died in late 2016.

“It’s not, so it’s always been interesting to me that we have two people in our family with it, so close together.”

We started chatting about different people we had heard of with Down syndrome, like the teacher in Argentina, and the people in the documentary “A World Without Down Syndrome.” I rarely see Marielle get agitated; she’s known for living in her own world a bit and being downright adorable about it. But as she spoke about the new NHS screening test that can detect Down in a fetus with a 99 percent accuracy rate (after which some women choose to terminate their pregnancy), I could feel a slight shift. Marielle got steadfast – there would be no arguing with her on this point (not that I would have wanted to). “Our family wouldn’t be the same without Nats, without Eddie. They bring so much to our lives, just the way they are. To make the decision to just not even give them a chance? I can’t help but feel like that’s completely rash.”

I started thinking about my own disease, type 1 diabetes. It’s autoimmune – for some reason the immune system turns on a person’s body and kills off the beta cells that make the hormone insulin, which breaks down the sugar in food into energy. Without insulin, all of the body’s systems quickly shut down. There’s no cure. No way to prevent it. Lifelong treatment is expensive and taxing. Potential complications are numerous. There’s a way to test for the genetic marker antibodies once a baby is born, but not in the womb.

 

“I wonder sometimes about how it would be if I passed type 1 down to my kid. I know I would feel horribly guilty; it would break my heart. I know I’d be there to help them and they’d have more resources than most, but it just doesn’t seem fair.”

When a mom has type 1 diabetes, there’s between a one and four percent chance she’ll pass it on her to her child – which is actually almost equal to the chance that a person could develop type 1 diabetes with absolutely no genetic history (like in my case). For some reason, and we don’t know why, if a dad has type 1 diabetes, there’s about a six percent chance he’ll pass it on. Still not statistically high. Despite knowing the numbers, it’s still a thought I have. What if?

“Who’s to say, though, that a kid won’t grow up and have issues with blood pressure, or alcohol, or cancer, or any other number of things?” Marielle said. “Are any of those worse, or better? What’s the line of what’s OK to have and what’s not?”

Beyond whatever genetic makeup I could pass down to a hypothetical kid, I’ve always worried about what a burden my own disease is to the people around me. I don’t mention my diabetes much in person unless I’ve been asked about it. I’ve gotten better about being more forward when I need to eat, or when my blood sugar is doing weird things I need to respond to. But I don’t like to make a big deal of it.

I’ll eat things I know I really shouldn’t when other people have cooked for me. I don’t like the feeling of people having to change their routines for me. When I’m for some reason in a situation where I need to explain the devices I have hooked to my body, I cherish people who make a quick joke about my being a cyborg and then keep it moving. Since I’ve been old enough to deal with it, I’ve much rather it been my load to carry. Not because I actually want to carry it alone. But because I don’t want to feel like I’m placing it on anyone else.

It’s a struggle between not wanting to be a burden but wanting people to understand enough that they pay attention. And never because I’ve asked them to. Only because they want to. Because this is not an easy thing to carry alone. It’s heavy. I don’t want it to be heavy for anyone else, but it makes it infinitely lighter for me when I realize other people remember.

Like when Marielle randomly asks if I’ve eaten often enough today.

Or when a new friend to whom I explained spoon theory makes a well-placed joke about not having enough spoons to do something silly and ridiculous.

I don’t want to be a burden but I do want you to get it. And I don’t know how to balance that need of not wanting this to be a solitary thing with not wanting anyone else to carry this for me. I don’t want anyone to worry, but I do want them to be aware. I don’t want to put anyone out, but I love it when it’s become part of someone’s routine to check in.

And it makes me feel slightly better when I remember how utterly human this is. Just like Marielle is fiercely protective of her sister and her uncle and would probably throw several of her beloved stuffed animals with all the ferocity she can muster at anyone who suggests they’re a burden, I know I have people in my life who would fight someone for saying I am one. And I would certainly call anyone in my life silly for even starting to utter the phrase, “I don’t want to put you out, but…” when it comes to anything they need to be OK. But for some reason we humans think that we’re in this alone, when we never are.

And I am utterly thankful for all of you who check on me when I get into this “am I a burden?” place. Thank you for not even letting me finish the sentence and for opening my juice box when my hands are shaking from a low blood sugar. You can’t begin to know what a big action that is.

This post originally appeared on Lala Jackson.

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Thinkstock photo via jetFoto.

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