_______________________

Disclosure

I am not a medical professional, I have never played one on TV, nor did I stay at a Holiday Inn Express last night.

Posts on this website simply convey the experiences of the author and are not intended to be taken as medical advice.

Talk about any changes you may be considering with your own medical team before changing your treatment regimen.

_______________________

_______________________

_______________________

_______________________

Recent Comments

_______________________

Archives

_______________________

Privacy

If you email me, your personal information will not be shared without your permission and your email address will not be sold to any company or entity.

_______________________

Content Rights

Sabbatical

Hello everyone, Strangely Diabetic is shuttering its doors for the foreseeable future.  I’ll lurk around here and there so just consider this a sabbatical

Thanks for everyone’s kind support!

Scott

Shame

I’ve written before about the shame I used to feel about having survived so long with Type 1 diabetes. Surviving while basically ignoring it for 4 decades. Surviving while so many didn’t or who’ve developed complications and worked so much harder at it than I did.

But that is a personal shame, one that I put on myself.  The one I want to talk about today is one that people seem to inflict upon others without second thought. And I will personally accept the thoughts that this post itself is shaming. But guess what, I don’t care. No type of political correctness can excuse what happened.

Several other bloggers have written about the Cross Fit debacle. That debacle then devolved into a second debacle where many Type 1 diabetics/caregivers actually joined forces with Cross Fit and started shaming the Type 2 community, which is part of my  community of diabetics.

That last statement is not because I am a double diabetic, type 1 since 1970 and being treated for Type 2 since 2008. It is a part of my overall health just like Type 1, depression, high blood pressure, high cholesterol, essential tremors and a humble-yet-always-correct-opinion.

It was shaming, shaming someone because of their health. It made me embarrassed for our entire community.

How many caregivers rebel against uneducated comments about “mommy must have given that poor child too much sugar”?  The exact message cross fit fired you up about? Well, you did the exact same goddamn thing to the Type 2 community and you should be ashamed of that. You know who you are, don’t bother trying to justify your behavior. There is no excuse for bullying.

There was another example of this very recently, Jim Carey’s response to California’s recent legislation on vaccinations (legislation I happen to agree with) where he shamed parents of any child with autism who had vaccinations as a child. He blamed the parents for their child’s health, in effect saying they caused their child to have autism.

T1 folks? Paying attention? Would you accept someone saying you caused your child’s diabetes.? There is really no difference between that and shaming the T2 community and blaming the person for having T2.

Yes the person, did you forget there is a person in the picture there?

But do you know what is really sad? The effect that those types of comments can have. People are already afraid to discuss their health since our culture is so quick to stigmatized and marginalize anyone considered “vulnerable” or “weak”. There are always playground bullies and the Internet is the biggest playground ever.

People become afraid to seek peer support, the very support we all extol as being so critical and a crucial part of any treatment regimen.

Diabetes and autism are not the only places this happens.  I’ve heard comments from someone I’ve always considered, and still do, as an incredible healthcare advocate about not having any sympathy for lung cancer patients. Are these people simply not worth the same compassion that people with other health conditions have? What’s the difference between lung cancer and Type 2 diabetes in that context?  How about cancer and Type 1? Or cancer and depression?

None.

How about mental health? The stigma says I’m weak. The roadblocks in finding treatment say I’m not worthy of receiving treatment.

And those stigmas and roadblocks apply to any health condition. Any. Of. Them.

You want to really improve health? Want to see lower, honest costs? Then help people find the care they need to be healthy and stop shaming people for bring human.

Guess what?

I am a clinically depressed, Type 2 diabetic.

Think I’m not worth it?

Think it’s all my fault, that I chose this?

Think I’m weak?

Think patients are weak?

Bring it.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

It's Been A While

Actually, it’s been a damn long while since I posted anything here. Good things are happening advocacy wise, I was named to the 2014 Medicine X Honor Roll and I’ll be part of a panel discussion on patient generated data at Health Datapalooza in May. The kind folks over at DSMA Live invited me over for a chat on April 2 and I’ll also be returning to Palo Alto this September as a Medicine X ePatient Scholar for 2015, doing an Ignite speech this time around.

Since I attended Medicine X last fall, I really haven’t had the urge to post anything. Does this mean I’m done blogging and advocating? I don’t know… I sometimes wonder if I feel like I’ve accomplished something. Just wish I knew what the hell it was.

One of my main topics has always been depression and chronic illnesses, especially diabetes. About how we simply can’t successfully treat one without treating the other. In the past year, that topic has taken a much more prominent spot in conversations taking place. This is fantastic to see and what is even better is that many of these voices are louder and more influential than I. Maybe I feel that I no longer need to carry that flag as much.

I recently attended the inaugural Diabetes Unconference which, by the way, is a lot like HIPAA because I can’t tell you. Or maybe it’s a little more Taoist as he who tells was not there and he who was there cannot tell…

But anyway, the main reason I went was to see if I could sort some of this crap in my head. It really didn’t help much though I did really enjoyed being there with such fantastic people and catching up with old friends and meeting new ones.

I think part of the issue involves how I’ve felt about things in general lately. I’m feeling a lot more comfortable in my own skin. Maybe, somewhere along the way, I’ve found some type of closure with all the guilt, shame and other baggage that I’ve dragged around all these decades.

I’ve also found myself being a lot more judicious with my energy, saying ‘no’ more often and trying to be mindful about day-to-day situations, actively deciding what thought or emotion was going to get dealt with now and which ones can wait until I decide to deal with them later.

Being a caregiver is still a burden at times, but I seem to be able to cope better most days. Depression is still a weight I drag around and I suspect I always will, some days it just weighs a lot less than it does on other days.

I guess I just don’t feel the need to be as loud a voice, at least for myself. But I’ve also written for those who either aren’t as comfortable with their own skin yet or are yet to come. So what should I do? I simply don’t feel the passion I used to have about all this, but who knows?

I sure has hell don’t.

© 2015 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

The Voices I Hear

At Medicine X I had the fortunate experience of being on a panel moderated by Carly Medosch on the topic of invisible pain and how it can affect people. My pain, caused by depression, really isn’t viewed as a debilitating pain by most people.

I was fully expecting to hear things like “You don’t deserve to be up there.”, “You don’t know pain.”, “So, being sad makes you hurt and cry? Be a man.”.

And boy, did I hear them.

Carly, co-panelists Emily Bradley, Joe Riffe (Check out his powerful Ignite! presentation), Summer Plum (who attended via video call from home) and the audience were very gracious to me, but those comments, haunting my thoughts, altered my participation. I just didn’t feel worthy of being up there with these people who were facing so much more challenging physical pain every day.

There are a lot of stigmas in society about our health. People with invisible conditions simply do not ‘look sick enough’, are faking it, just want attention, drugs.

The stigma involved with mental illness is pervasive, world-wide and universal. It is such a basic form of bigotry in human culture that we all learn it without understanding, practice it without realizing, and pass it on without trying.

And those voices, the condemnation in those voices. The disdain just dripping from the comments revealing how weak and tainted society, everyone at this conference, everyone in this room saw me.

Those voices? The ones haunting me? No one said those things to me. No, they were in my head.

Yes, in my head. It’s not just an issue of self-esteem, thought I’m certain that plays some role, it’s a much more basic issue of being human in this world.

Like everyone else, I learned at an early age that mental illness makes you broken. Even more so when you talk about it openly. Even more so as a man. It makes you weak in everyone’s eyes. Weak in my own eyes.

I have to fight that stigma, overcome that bigotry in myself before I can talk to anyone, let alone the world, about it.

Depression is debilitating at times, making it almost impossible to get out of bed, to function, to simply live for a day. And if I do? I spend most of the day laying on the couch mindlessly watching TV or being barely functional at my job. I’ve mentioned Spoon Theory before as a measure of how much energy I have to burn when I’m depressed, burned out. Some days it takes a spoon just to think about getting our of bed, a second to decide to sit up, a third to get up, and a fourth not to go back.

I don’t know how many spoons I had going into that discussion, but I had burnt them all by the time it was over. I felt so out-of-place, hampered by my own preconceptions of what I thought everyone else was thinking about me. I wonder how many actually were? With in an hour or two of that session closing, I was back at the hotel because I was falling asleep standing up, simply exhausted.

At one point the conversation turned to the ever mentioned pain scale and I did describe a 9 out of 10 as a day where I can’t get out of bed, a day when I simply don’t have those four spoons.

I was very glad that no one asked me what a 10 was.

** Disclaimer:  I was awarded a partial scholarship to attend Medicine X 2014. MedX is not compensating me for any social media posts I make and the words, ideas, and takeaways are my own.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

A Tale of Medicine X

Walking down the hall toward my first panel discussion on Chronic Illness and Depression (check it out below), I was feeling pretty anxious. While I’ve written extensively of my own experiences with depression and my journey with therapy, being recorded & even part of a live webcast was uncomfortably different. I was putting a lot out there in front of a lot more people than I might normally reach.

The normal thoughts went through my head. You know the ones where I’m weak, faking, shamed, embarrassing, worthless and certainly not at the level my friends and co-panelists (Hugo Campos, Ann Becker-Schutte, Gonzalo Bacigalupe, and Erin Moore) and moderator (Sarah Kucharski) were.

But you know, that was the stigma of mental health talking. That stigma is so pervasive, so ingrained in human culture that I have to get past it in my own head before I can even discuss it.

In a sense, I felt as if I was climbing to the high-wire and there wasn’t a net.

As I waited with my friends, we began to joke a little and that helped relax me so when I got on stage, I felt quite calm and collected. It was when I came off stage that I got really wound up, wondering “What the hell did I just do?”.

Several people stopped me afterwards (thank you all very much!) and thanked me for being willing to discuss depression in an open forum such as Stanford Medicine X, most commenting that it was a “brave” thing to do. I’m don’t think of it as brave, it is simply something that needs doing and I am able to do it.

I needed to decompress after that session, so instead of hanging out with everyone I chose to sit alone, drink a few cold ones, recharge and let things brew in my head. After a while, I understood what really sets this conference apart.

The people.

My co-panelists, the attendees, the event staff, the other speakers, my fellow ePatients and especially our advisers (Liza Bernstein, Hugo Campos, Britt Johnson, Sarah Kucharski, Christopher Snider, and Nick Dawson) and conference organizer Dr. Larry Chu.

They all help make Medicine X a safe place. On more than one occasion, I saw everyone on that list go the extra mile to help someone else out. I can’t think of a safer place to discuss stigmatized conditions, especially for the first time. Honestly, I’m not sure i would have been able to do so anywhere else with any semblance of calm.

Afterwards I spoke in the hall with my ePatient adviser and moderator of my panel, Sarah. She believes that since we were willing to talk about chronic illness and depression, we have a responsibility to do so and I agree.

The key part of that statement is “willing”. There are huge stigmas out there regarding mental illnesses and they can hurt, so don’t feel bad if you are uncomfortable talking about this in a public setting. That’s perfectly normal and totally OK.

I`m fortunate enough to have a co-morbidity of not really giving a damn what most people think about me. I mean, seriously, who can say something about me that I have not already said about myself?

But the stigma… the stigma of mental health. The being weak, fake, worthless, and that I should ashamed and embarrassed. As much as I want to get past it, I still struggle at times. As much as I want to see it stop, I still struggle with calling out those who basically like to bully people with an illness. But the people at Medicine X not only made mental illness a focus this year but also made the conference a safe place to talk about it. For that, I am grateful.

And since I am willing to talk about, I agree that I have a responsibility to do so, and to do so loudly.

You can read other posts about Medicine X 2014 several of which also talk about the safe environment of the conference, such as the ones by Carly, Kim and Joe!

** Disclaimer:  I was awarded a partial scholarship to attend Medicine X 2014. MedX is not compensating me for any social media posts I make and the words, ideas, and takeaways are my own.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com