Wednesday, October 1, 2014

Being balanced is key

I am in my 25th year living with diabetes.

It hasn't been all pleasant, or easy. There have been days where I have felt trapped, ignored, jaded, and angry. Everyone living with a chronic illness has days, weeks, months and years feeling like this. It's important to recognize that this is part of living with the disease. We should never hide the fact that there is a psycho social effect in living with T1D.

I think we, as a community, should hold the responsibility to help others out of the dark places. I think we, as a community, are ultimately responsible for the public perception of what life with type one diabetes is really like.

This is truly displayed when things like #dayofdiabetes pop up. I urge people to step out of their comfort zone and take part in these things. To rise above their discomfort with sharing their day-to-day life with diabetes and show your twitter followers or Facebook friends that life with diabetes isn't always climbing mountains, or runs across a country.

What I strongly discourage, and I feel I can say this since I live it, is people promoting that life with T1D is absolutely awful 100% of the time. That is as much of a lie as people stating it's a walk in the park, a gift, or a great thing.

There is a movement that was started by one mother, pictures of (mostly) children (though there are some adults) posing as though they are jailed by diabetes. When I first saw this I felt sad that those children felt that way, I felt sad that the parents portrayed diabetes that way. I let it sit for awhile. I read the blog post a few times. I get it. I  get why there is a movement happening. I live it. I am diabetic. I know this disease. I eat, sleep, breathe AND work with this disease.

I mentioned yesterday that I felt this was a misguided movement. I put it on twitter, very openly and engaged with a few members. They both immediately asked if I read the blog post because that explains it. I assume a lot of people don't read the lengthy post, so they only see the negative side effects a movement like this can have on people.

And that's where the problem is.

The people who started this movement aren't bad people, they're trying to help convey all sides of T1D. I know what they are trying to do. I don't think they are conveying their message effectively. I think the message the snippet of a child in a prison photo gives is off-base for the movement they are trying to push.

In today's advocacy, fundraising and awareness environment you have a few seconds, a glance at a photograph, a few words to convey your message. You have 140 characters, a hashtag or a ten second video to explain your entire world to people. I think these pictures are not conveying the message in the blog. I don't truly believe the children in those photos feel that way all the time. I was one. I AM one of those people. If they do feel that way all the time, to the children and the parents: there is help, please do not hesitate to get the help needed to deal with chronic illness.

This isn't always bad. Honestly it isn't. Just because it isn't always bad, doesn't mean it should have less respect or knowledge from the public. I think we have to be more balanced in how our movements and advocacy brig awareness to not only T1D but our community. On both ends.

When we are dealing with social movements and advocacy the whole world is watching. We must be diligent and mindful to present a balanced representation of our lives.


If you feel that you are living as a jailed person with T1D. If you feel you are trapped in an awful life with diabetes, here are some resources to help you. I urge you to speak with your healthcare team to make sure your psychological well-being is looked after as much as your physical. It's so important.

Canadian Diabetes Association: Diabetes and Depression

Canadian Diabetes Association: Diabetes and Your Emotions

American Diabetes Association: Does Diabetes Cause Depression?

A Mile in My Shoes: Joe Solo

Diabetes Burnout: What to Do When You Can't Take it Anymore

3 comments:

  1. I totally agree with you regarding the negativity. In over 30 years with Type 1, I never thought of myself as a victim. NEVER thought of myself imprisoned without parole. And though I sought equality, I never wanted sympathy. Diabetes was just something unfortunate that happened to me.

    Maybe I never thought of myself this way because nobody ever TOLD me that I should think of myself this way. My thoughts about my diabetes were my own, with no outside influence. It seems that today's "outside influences" are dangerous and can make us think less of ourselves.The positive messages can be dismissed as fluff or superficiality, but the negative ones stick in our minds.

    I agree with you that the intent is good, but I'm not quite embracing (and certainly not encouraging) the message. Your inclusion of those links at the bottom of this post is fabulous. For those who truly believe the message they are sending via the photos, those are some great places to turn. I commend you for having the courage to post this dissenting and honest view of a well-intentioned diabetes awareness campaign (movement, whatever).

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    1. It definitely hasn't been without backlash. I have had a few attacks. I just feel bad that people can suffer so much.

      But you put it better than I did :) We are in 100% agreement.

      PS: It's been awhile! Hope you're well, Scott!

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  2. I am total agreement with you Alanna (and Scott - I was brought up the same way too) . I've had a few episodes of backlashing from parents and other readers of my blog over the years - we all have different opinions - but still - come on - WE ARE ALIVE. Sadly, I'm seeing too many nonD friends lately dying of cancer. If they had diabetes - tried to do their best at controlling it with tools available - life can be good. It's just abit of work from time to time. I actually had someone in the forums at Diabetes1.org where I post from time to time - say that carrying our blood testing equipment with them was like having a handicap. Now that got my fur all up stiff - and not in a pleasant way ;)

    I've actually found having diabetes to be a blessing in disguise - it's brought me advocacy work / ways to help others understand - I feel less alone than I ever did since joining up to the DOC (Diabetic Online Community).

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