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Talking About Complications.

I wanted to share a link to this month’s diaTribe column, because it touches upon a topic I feel strongly about: discussions about diabetes-related complications.  I was diagnosed with type 1 diabetes twenty-seven years ago, but with macular edema more recently, and am learning every day about the influence of stigma and fear on my own diabetes management.

Complications happen, and discussions about them shouldn’t be relegated to whispered fears in the bedroom after the lights are turned out. The language around complications needs to change from one of fault and guilt to that of perseverance and renewed hope. We, as a patient community, have the right to disclose our diabetes complications without being blanketed – and suffocated – by judgment. If a complication becomes part of our personal healthcare spectrum, we need to feel empowered to face this new health issue with confidence that there is life after this diagnosis, too. We should be met, by health care professionals and fellow patients alike, with the support and encouragement we need to not lose the reins on good health habits, and to be inspired to make new ones part of our regimen.”

Thanks for popping over to diaTribe to give the column a read, and I’d love to hear your thoughts on diabetes complications and the language they are surrounded by.

6 Comments Post a comment
  1. Didn’t see a place to comment over at DiaTribe, so I’ll comment here. No doubt, complications are difficult to talk about. Both from a patient perspective, from a “supporter” perspective, and from a loved one’s perspective. I’m always worried I’m going to upset someone if I try to help them, even if just to listen. So often, I remain silent when maybe I should offer a little empathy.

    Just think what an amazing breakthrough it will be when we all can talk openly about complications. It’s definitely a wall that needs to come down. Thanks

    12/3/13; 5:11 pm
  2. andee #

    Last year my eye doctor told me I had the tiniest, very beginnings of damage after 22 years. I melted down and cried and cried. When I told my Mom she said, “yeah that’s ok; I figured it would happen eventually. You’ll just deal with it”. I wish I could have had a better attitude like my Mom. It’s just part of my life, it’s not a connotation of me being bad or good – its just a fact.

    12/3/13; 5:14 pm
  3. Allison #

    I’m terrified of complications. I’m 29 years old and just 8 years into my diagnosis, but man I see a bazillion “floaters” in my right eye. I have them checked every year and my doctor says my eyes look great, but I feel like I know what’s eventually coming. And I’m going to feel horrible about it…that this Big D that I want to consider just a “condition” will morph into feeling like a “disease”. It won’t be fun to talk about because of emotions, not knowing what caused it (genetic disposition towards complications? not perfect-enough A1C’s? etc), stigma and so on. When I had both of my pregnancies, particularly the first one, I was insanely private and quiet about it. I was scared about the judgment from others (coworkers, not family) for my choosing to have a planned, high-risk pregnancy. Maybe I didn’t give people enough credit, but it’s not easy to open up regarding such a personal and misunderstood condition/disease.

    12/4/13; 10:57 am
  4. Melissa Kauffman #

    This article came at the right time for me. Thank you for finding the words that I have tried so hard to express to loved ones.

    12/4/13; 11:27 am
  5. julia #

    Thank you for being brave enough to post on this issue. Parents of children with Type 1 or PWDs in the early stages of diagnosis are often in a state of denial or they have been misled by the medical community to believe that if we can just keep the A1c in the 6 to no more than 7 range, the risk of complications is negligible. This is untrue, as we cannot control blood sugar spikes in the low 200s and above. Children cannot go on a low carb diet and there is no way to prevent a spike to at least 200, even if for an hour or so, every time they eat. And we all know that high blood sugars are caused by stress, illness, malfunctioning sites and for many other reasons. The diagnosis is diabetes mellitus, uncontrollable. I emphasize the “uncontrollable.” We can manage the highs but without a very fast insulin, we can not bring highs down fast enough. And not enough is known about this disease to even know if high blood sugars are the only reason complications occur. For heart disease, all Type 1s have thicker arterial walls within a year or two of diagnosis. Diabetes effects every organ, every system in the body. PWDs are remarkably proactive, even obsessive about their health for most of their lives. To then stigmatize or place blame once complications start to occur is cruel and misleading. We must stop blaming ourselves. We must not allow the medical community to place blame on us. We must speak up. We must ask JDRF and DRIF to donate a portion of the monies we raise toward a cure to prevent or develop newer drugs to help with complications. A cure would be best but these organizations should not be a one-trick pony. The truth is that most will develop complications, hopefully, they will be minor or manageable. I have a sister who is nondiabetic who suffers from macular degeneration as well as a cousin, also nondiabetic, now in her late 40s, who has had macular degeneration since the age of 21. The nondiabetic form of the disease. Both are fine. And with good care, good specialists, always seeking a second opinion, I have confidence you will be too. Afrezza may be released by year end, which could put an end to postprandial highs. Affreza peaks in 15 minutes, 3 hour duration. It’s inhaler is not the same as Exhubera but tiny and portable. Afrezza also is NOT the same as Exhubera but a very fast acting insulin. Reconsulin (Oral-lynn) may be released in India soon. This insulin also is very fast, peaking in 30 minutes, out of the system in two hours. There may soon be options to completely limit the amount of time your blood sugars are high.

    12/10/13; 10:50 am
  6. Maureen #

    I read the article on Diatribe. I have had type 1 diabetes over 30 years and about 8 years ago my regular eye doc. said I “had a little retinopathy.” I left his office and cried. I started going to a specialist and last year I did have bleeding. At first I didn’t notice any change in vision but the doctor said to hold my hand over each eye and focus on something. I realized I had a big cloud in my line of vision in the left eye. He sent me to another doctor for treatment. I had three monthly injections of avastin, which they said was better than the laser treatment. My vision got better but is not 20-20 anymore. I am happy they were able to stop the swelling before it got worse. I teach in a community college and do not want to lose my vision.

    12/29/13; 7:04 pm

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