Skip to content

Posts tagged ‘support’

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

*   *   *

Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

*    *   *

:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.

 

Looking Back: Kitty.

I don’t know if I have a spirit animal, but my diabetes does, and it’s Kitty.  Kitty is a ragged and rumpled stuffed animal who kept me company as I navigated my first few weeks of life with type 1 diabetes … and he still lives in the laundry room of my house now (safe, warm, and occasionally snuggled).  He’s my old-school diabetes support.  Today, as I’m traveling to Washington, DC for the Diabetes Sisters weekend conference, I’m looking back at when Kitty came into my life, and how he made me feel safe.

*   *   *

They told me I had to go into the hospital for a few weeks.  I wasn’t exactly sure what “diabetes” meant, but I knew it must involve vampires, because people were drawing my blood every few hours.

“You can pick any friend you’d like to bring with you to the hospital.  Any one you want.”

My father held my hand as we walked into Ray Willis’ Toy Store and I looked at the rows and rows of cuddly and soft stuffed animals.  My seven year old shoes clicked against the tiled floor as I examined the fare.

The soft ears of a gray elephant looked so nice.  I could picture myself hiding behind them if I was scared.  I saw an amber-eyed puppy dog with a pokey little nose.  He looked like he could be my friend.

Then I saw it.My beloved Kitty.

Kitty.

A huggable, marmalade-colored stuffed animal cat with bright eyes and a long, fluffy tail.  He was sandwiched between a giraffe with the tongue sticking out and a stuffed octopus (can’t figure out why anyone would make one of those).

I reached out with my little hands and grabbed him from the shelf.

“This one?  Is this one okay?”

My father gave me the thumbs up.  “That one looks good to me.”

Mom and Dad paid for Kitty and we started our drive up to the hospital for my overnight stay.  Originally named “Tigger” but eventually falling victim to a less imaginative moniker of “Kitty,” I kept this stuffed animal at my side for every blood test and doctor visit.  He was a loyal friend and received the occasional shot, too, when I wasn’t feeling brave enough to be the only one being injected.

I used to wag his tail and make him wiggle about, trying to convince people in the hospital elevators that he was real.

A boy on the bus in second grade tried to pull Kitty’s arm off and gave him a good rip.  I cried to my mother, who was about to sew up the wound with orange thread, that she needed to use black thread so it would look like a stitch and I would know he was better.  Ever-obliging, my mother stitched Kitty up and I admired his war wound with fascination.

Siah is not a fan.

Twenty years later and no longer the newly diagnosed little girl at the toy store, I’ve had this Kitty with me through it all.  He used to look vibrant and fluffy, but now his fur is matted and mangy.  He lived on my bed in college.  He moved to my first apartment with me after college.  Even when I felt “too grown up” to have a stuffed animal on display in my house, Kitty has managed to weasel his way into a bookcase or a closet shelf.  Currently, he lives on top of my winter sweaters in my closet, looking at me with his matted fur and sad eyes from the mountain of wool and cotton.

He made me feel comforted.  Admittedly, he still does.

He’s a testament to how long it’s been.  And how far I’ve come.

(But Siah doesn’t like him too much.)

*   *   *

My Little Orange Bracelet.

At the Friends for Life conference, people who are living with type 1 diabetes wear bright green bracelets.  Green bracelet’ers are the people who know what my diabetes life is like, from the injections to the blood checks, from the guilt to the successes.  They get it.

But the orange bracelets go on the wrists of the loved ones of people with diabetes.  The moms and dads.  The siblings.  The friends.  The people who take such excellent and compassionate care of PWDs.

And this year, there’s an orange bracelet on the wrist of my three year old daughter, who is experiencing her first Friends for Life conference.  She’s played with beach balls in the exhibit hall and covered her name badge with stickers, danced in restaurants while waiting for ice cream, had her face painted, and made art projects out of colored pom poms and pipe cleaners. She’s meeting other mommies who have type 1 diabetes, who wear their insulin pumps on their hip and test their blood sugar.  And she’s meeting other little kids who have parents who are wearing green bracelets, who know that glucose tabs are for “whoa bwoodsugars” and that our bags are always packed with snacks … for everyone.

This is the magic of Friends for Life – it’s not just magical for me anymore.  It’s for her, too.

Follow

Get every new post delivered to your Inbox

Join other followers