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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

Are Patients a Distraction at Conferences?

** Next week, I will be attending the Medicine X conference as an ePatient Delegate Scholar. Medx is one of the most patient focused conferences on the planet with attendees from all portions of the healthcare spectrum and the world. I thought this might be a good time to re-post this from about a year ago

© 2013, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Recently, I was bemoaning the fact that while the first conference specifically addressing diabetes and depression was a good start, there really wasn’t a significant patient presence (not to mention we only learned of it about 4 days before the event). Lot’s of experienced professionals in the field, but startling few people who had actually walked-the-walk with significant depression for years, decades even.

While this format will surely offer a lot of information from the professionals viewpoint, it seems that it would be a bit sterile, without true context unless attendees could actually hear the effects of depression on patients.

A couple of comments caught me a bit off guard, these come from a single HCP and I’m trying to explore how pervasive this opinion is.

One included a comment that said

At events like these, patients are a distraction when HCPs want data first, implications second. It’s for the best, trust me.

Data without implications, without context and effects? Without any of those things, why is that data valuable at all? The implications, the context is why the conference was being held in the first place. Data is only part of what constitutes knowledge, you need context to make it relevant to anything.

I replied that I felt that comment was very paternalistic and their reply said to remember that they had feelings too. Replying that I also had feelings, the next reply gave an explanation that ended with:

The patients I’ve seen present have been ended up just yelling at doctors.

I agree that the stage should not be used to just yell, but I have to wonder if that was actually what happened or if the reason people are willing to get up there and present is being totally overlooked/ignored/disregarded/misunderstood.

Patients tell their stories and advocate so that whatever happened to them won’t happen to anyone else.

Stories are very powerful, which why they’ve been around since we climbed down from the trees. Stories put a face on an issue, make it real. It’s no longer some stat or incident report, it now has happened to a person.

Now, that’s pretty much all ePatient Advocacy 101. What really disturbed me a couple of days later was the thought that HCPs attending these events may have a ‘cultural’ bias against patients presenting, viewing them as simply a bitchfest in front of an audience.

Does that preconception exist in the medical community? Is that sentiment common among HCPs? Are these stories of things that patients, that people have gone through, endured, survived simply viewed as “woe is me, look at what these bad people did to me?” How many professionals actually look at these stories as something to learn from?

If that doesn’t happen, if that culture shift does not take place then it will not matter how participative patients are. The marginalization of patients will continue.

In effect, patients will simply be a side-show.

** Also, check out the Global Access Program at Medicine X Conference 2014, this program will allow you to virtually attend the conference wherever you can get an internet connection at no cost (registration required)

© 2013, 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Means and Ends

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

I recently attend the annual Friends for Life Conference in Orlando. This was my 4th year and I usually really enjoy it and come back recharged.  While I enjoyed chatting with folks and catching up and needed the few sessions I did attend, I felt unusually disconnected this year. I didn’t get a recharge or feel more energetic when I got home.

I’ve become a pretty big believer in Spoon Theory as it relates to depression and burnout, it is the best explanation that I’ve seen of how we have to decide what we are going to expend ourselves on.  For most of this year, I’ve been faced with a rapidly dwindling supply of spoons.

What this means is that after I make sure that mom is cared for, after I get work taken care of, after I get my diabetes taken car … ah crap. Ran out of spoons. The result of this is quite predictable. Eventually all this crap flows up hill and the frail infrastructure I call ‘me’ starts to devolve.

My family has helped by staying so I could take that trip to Florida, making sure she got to appointments. But it was the monitor, the one I have on 24×7 so that I can hear if she calls out, that seems to drain me the most. It seems it’s something that I can’t escape, even when I sleep.  Sleep hasn’t been very well for a while, years actually. I even went as far as taking the clock out of my bedroom so then I wouldn’t watch it and worry about how tired I’d be when the alarm went off. I recommend this by the way, removing that LED reminder was one of the smarter things I’ve done recently.

All the usual signs of depression stopped by to stay a while. You know, the loss of interest, withdrawal, bad coping skills. I’ve spoken with Morpheus off and on over the summer and while she didn’t seem surprised about my lack of recharge, I think I did surprise her about a couple of things that were going on. As a matter of fact, I don’t believe that I had ever really seen her look truly concerned about me like she did at one of our little chats.

I kept pushing myself trying to get out of bed each morning without using 3 spoons (one to decide to get up, one to actually get feet on floor, and another one not to go back to bed).

And then? Well then, my body finally said “Enough of this”.  I spent the next 5 days sleeping anywhere from 12 to 18 hours a day. And it was a good sleep, rest that I obviously really needed.

One evening during that period, I took mom grocery shopping. She had some family visiting from California and was excited to see them. She’s really been struggling with some health issues lately and had finally gotten a clean bill of health from the doctor. So there was some excitement and a little pep in her step as we went down the shopping aisle. Mom believes that she ‘has’ to fix something if people you only see once a year are coming to visit, no potato salad from the deli counter! So made from scratch it was.

As I watched her pick out her groceries, even as I was about ready to drop from exhaustion, I smiled as it occurred to me that I had made a choice. And I was grateful that excitement was still part of her life partly because of that choice.

Yes, there have been costs to that choice for a reason. But sometimes, just sometimes, the ends do justify the means.

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