Are you ashamed of having diabetes? How do you get past the shame?

I've always been ashamed of the fact that I'm T1 diabetic. Why? Because it's caused so many problems in my life, I feel many people think I'm a "weak" person, and somewhat fragile. I've had to endure a ruptured appendix, a kidney transplant, and a couple of other surgeries over the past few years, and it's not something I'm proud of. Every time a friend or family member walks into the hospital to visit me, I've got a plethora of tubes and needles hooked up to every orface of my body. It's embarrassing.

T1 diabetes is misunderstood by so many people, that I feel I always have to educate people about it and defend the disease. When I had my kidney transplant a year ago for example, many non-diabetics I spoke with assumed chronic kidney failure was caused by drinking. They didn't realize that T1 diabetics are at a high risk of developing kidney failure.

Many people also don't know the difference between T1 and T2 diabetes, and that's also part of the problem. Another is that the media never really distinguishes between T1 and T2 diabetes. But additionally, some doctors don't even know what new symptoms continually arise when living with the disease. As a result of people's ignorance, I've had to endure a lot of discrimination in my life.

So how do you get passed the shame and the anger? I think the answer is to educate people. I think the only answer is by facing it, owning it, and talking about your experience. Over the past few years, I've had to fight against insurance companies, fight against discrimination, and fight with doctors who didn't know anything about the disease. Lately, I've realized that being angry is too tiring. I've been stuck in a depression for 35 years because of my shame, and now I want to get past it. I feel I need to own the disease and let people know what I'm experiencing with it. If I can educate at least 30 people over the next two years, hopefully it will rid me of the shame of living with T1 diabetes.

Views: 266

Comment by beechbeard on November 30, 2012 at 11:30am

Anger was my constant companion for a least 30 years. I got so used to being depressed that it became a "security" blanket - I thought people who took pills were weak. I finally got fed up and asked my endo for help. He prescribed an SSRI antidepressant. For me, it worked the true anger went away. HTH

Comment by Jacob's mom on November 30, 2012 at 12:50pm

what a touching post, my son is only 14 and feel that his shame is more age related self consciousness, i am working hard to help make jacob a "happy" well adjusted diabetic, i am 100% with you in that anger, resentment, fear are all not the answer, acceptance and love are the only answer to a better life and contentment. education is also important, but also keep in mind, people are inherently selfish and unless they are personally invested in learning about D or very empathetic they may not be open to you, unfortanately. i feel true healing always starts within. i am a yogi and self help book geek. i am currently reading marianne williamson's a return to love and i would highly recommend it. wishing you peace, amy

Comment by Stemwinder (Gary) on November 30, 2012 at 7:08pm

Being T2 I realize the shame that can be heaped upon us. We can create our own shame by feeling that we are a burden on others but we did not ask for this disease so why feel ashamed.

Good for you for deciding to take ownership for this disease instead of allowing it to own you. Let's be proud for managing in the face of this most difficult disease and you know what, I have long since quit caring what others think.

Comment by acidrock23 on December 1, 2012 at 6:52am

I totally agree that the best way to approach diabetes is to work to own it! I was 16 when I was dx'ed and sort of embraced diabetes as just another part of sex, partying and rock and roll and didn't look back too much. I had some *wild* years but didn't really think about any consequences since I figured I wouldn't last much past 40. Then, when I was like 35 or so, I started noticing obituaries of people who were my age w/ JDRF/ ADA listed for donations. I had gained weight "chasing the dragon" (too much insulin and chasing BG w/ food, lots of food...) and wasn't very active.

A friend of mine taught Tae Kwon Do classes and said "you should try it!" and was really positive and inspirational to get me going. I soon started walking around the neighborhood in the hopes I'd feel less gassed and it turned into a cycle that sort of fed itself. I've jumped on several people (including my cousin, a nurse, who oughta know better...) posting ill-informed things about diabetes by stressing that both kinds of diabetes are genetic problems that don't have anything to do with the person in question or their behavior. I guess I'm not ashamed but, since I've gotten active, I feel like I've done something important for myself and have helped people I encountered understand that it's not a handicap as much as a TREMENDOUS annoyance.

Comment by Janice on December 13, 2012 at 9:21am

Beechbeard, I've had a lot of anger over the years too.

I've never done this before, but I'm actually going to tell my story, so I hope you guys don't get bored. When I was diagnosed with t1, I was visiting my parents, as I was a university student. I went to a walk-in clinic and they told me to immediately go to emergency, so I did. After five hours of waiting, the doctor came to my bed and told me I had t1 diabetes and hypothyroidism. She then told me there were no beds available in the hospital, and she asked me to go to my brother's house and have him show me how to use the needles as he was also tl. I left the hospital dumfounded. Nobody educated me about either of these new diseases, and unfortunately, my brother was an addict so it was apparent he wasn't the best person to ask about using needles.

I went back to university and didn't know what to do about my new diagnosis. It seemed nobody really cared about my situation, so I didn't either. I, like my brother, became an addict instead. I was p***ed off at the disease and wanted nothing to do with it. I didn't regularly check my blood sugars. and I didn't really care about much in life. I couldn't even really educate myself because there was no internet back then, plus not a lot was known about t1 diabetes.

A few years after I graduated, my brother became schizophrenic. He threatened to kill me on several occasions, and my blood sugars skyrocketed. I felt horrid both physically and mentally. It turns out I had chronic kidney failure in addition to the diabetes and the hypothyroidism. Because I was so fearful of getting a kidney transplant, I left for South Korea to teach English for two years and to try and search for answers within myself. During my stint, my brother died from t1 diabetes and crack. I was overseas and never had a chance to say goodbye.

When I came back to Canada, I had no choice but to deal with my diabetes because if I didn't, I was going to die. During the four-year process in trying to find a donor, I was still smoking pot and drinking. It was the only way I knew how to cope. Nobody got tested, nor did anyone including my family, ever talk about the transplant. That's when I became more ashamed of the disease. I blamed myself that nobody was going to get checked to see if they were a match. I felt I wasn't worthy of a new kidney, and I fell into a deep, deep depression.

When I tried applying for long-term disability through the company I worked for, I was instantly denied because of the fact that I was t1 diabetic. Diabetics aren't covered in most company policies. I had to fight with them and take the case to the Human Rights Commission with only 9% of my kidney functioning. Finally, my sister came forward and found out she was a match and the insurance company gave me my disability one week prior to my transplant.

Although elated and blessed with a new kidney and new chance at life, my anger and shame were at a substantial peak in my life. My body went through many drastic physical transformations, and I completely broke down. I soon started my counselling and realized that I was sexually abused at age 10 and throughout my life.

BUT, I've been dealing with it. I started counselling two years ago and I'm on the road to recovery, While I was living through all of these situations, I was writing about them too. I know I'm not the only one who lives or has lived with barriers, shame and anger. I know what is involved with being the "ideal" diabetic, but getting there can seem impossible when you are at your lowest point. I've decided to help people who are stuck in their depression, by helping them identify with what is causing it. There are so many aspects of diabetes that have not been written about, so I've made a journal of what isn't discussed in these chat rooms so I can face them head on. I'm also no longer angry and I'm coming out of my depression.

Most people I've talked to about this have told me that you have to take ownership, and I understand that and I've done that. But as a t1 diabetic that has been through the system, I want to make changes to these insurance company policies. I want to end or enlighten non-diabetics about the discriminations we have to face. I want to create an opportunity for us to improve life for diabetics by ending the discriminations we have to deal with on a daily basis, That's why I encourage people to tell their stories. If we don't talk about these issues, nothing will ever be resolved.

Comment by Jacob's mom on December 13, 2012 at 6:05pm

what a heavy load you have had to bear. so glad you are sharing and bring it forth so that you can release it and live for now with the blessing of your new kidney. set the past aside and move into today, one greatful moment at a time. i hope you continue to grow and feel the love within you and around you. many blessings, amy

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