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