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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.

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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.

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:: 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.

 

9 Comments Post a comment
  1. Kim – As expected, I can so identify with this. While I am on the lucky side of complications, I grew up reading Diabetes Forecast and had to stop eventually because it really freaked me out (back in the 70’s and 80’s) all of the letters from “Hi, I’m 46 years old and had my left foot and right hand amputated” – It scared the hell out of me! It was all fear because no one ever really talks calmly about what could happen and how to either prevent or deal with it if you do.

    I never talked to any one about anything to do with Diabetes growing up. I was ashamed of it. I had an Endo up thru my teens who talked to my parents only. I’m 16 years old and they’re lecturing my parents about how I need to do better, like I’m not even in the room. Yeah and A1C of 15 is pretty bad – so tell me how to work on it – speak to me like a person!

    OK Rant over.
    I love you lots Lady!!!

    And thanks for sharing Kerri!!

    08/28/15; 10:50 am
  2. Well said Kim! You are a brave soul and I’m so glad to have met you! Keep up the wonderful sharing 🙂

    08/28/15; 10:55 am
  3. NO ONE should have to endure these things alone. Thanks Kim (and Kerri).

    08/28/15; 2:26 pm
  4. Kim, many thanks for sharing your story. You are most courageous! Far too many medical people have chosen to disregard the human component of their patients. That makes it imperative that as PWD’s we speak up to avocate for others and provide the much needed support. Keep up your good work Kim!

    08/28/15; 2:47 pm
  5. Thank you so much Kim for your bravery and honesty, I’m sure your post will help so many. And it’s true we talk so much about being strong, and how to live a good life with diabetes, which of course is important, but we don’t talk enough about the harder things…and give reassurance that it’s possible to live a good life even when the worst happens.

    I had a hemorrhage a year and a half ago due to proliferative retinopathy, which led to other eye complications, some of which I’m still dealing with. I’ve been through 5 surgeries (and I’m still not done) and lost much of the sight in that eye. It was terrifying, expensive, sometimes painful, and during it all I felt so alone. I questioned everything and blamed myself even though my A1C has been under 6 for the past 20 years, and after all those years of hard work I just wanted to give up.

    But you know what? I’m happy, strong, have a writing career I love and a beautiful daughter (who, by the way, I probably wouldn’t have had without diabetes!) I’m living a damn good life with just a few hiccups to interrupt it. Diabetes naturally makes us strong, intrinsically better able to deal with those hiccups, and I truly believe we’re never given more than we can handle.

    08/28/15; 3:49 pm
  6. Sue #

    There are so many feelings around diabetes- yes, we need to talk and share about them all. Way to be brave!

    08/28/15; 7:11 pm
  7. Ria #

    Thank you for writing this
    We have to really start paying more attention to the emotional complications of this awful condition we were dealt
    For the critics ” walk a mile ( or two) in my shoes “

    08/28/15; 7:25 pm
  8. Another great guest post! Thank you for opening yourself up in this way, Kim. Many people would choose to not share their deeply personal experiences. I’m glad you did.

    08/29/15; 11:07 am

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