Ken's wife, Corina, lives with Crohn’s disease. Ken uses YouTube videos to "educate the public on what it actually feels like to live with a chronic illness." He believes "it's time for compassion without conditions.”
What was your and Corina's life like prior to her being symptomatic?
We had many friends, hosted dinner parties, went out frequently (we loved watching the local roller derby team, the Battle Born Derby Demons). We enjoyed wine and cocktails, living at the gym, going to local events. Corina particularly loved to roller-skate. We bowled in a league (we have our own bowling balls still, though it’s been years since we’ve used them). It was a whirlwind of activity, and we loved it.
How did both of your lives change after?
As many who suffer with chronic illness, as well as those who care for them, know, your social life is one of the first things to suffer. Not many people have the tenacity to stick around when they can never be sure if you’ll show up when they invite you places. So things got very quiet, you could say.
I've heard you describe your "ah-ha" moment. Would you share that story with our ProHealth readers?
The big “ah-ha” moment for me was when my wife came home in tears from her job (this was back when she was still able to work) and told me she had been called into a meeting with a couple of high-level managers and told that she really “needed to look less sick” when she was in the office, because her being visibly in near-constant pain was “making people uncomfortable.” That’s when I knew that there was a big problem with how the chronically ill are treated in today’s society.
I know it cannot be easy being married to someone with a chronic illness. Were you always a supportive husband or did you need to learn to be?
Both, because being supportive is always a work in progress. Marriage requires more than just love; it also requires effort. That’s even more true when one of the two spouses has a chronic illness. Any marriage requires communication from both people for it to continue to grow and evolve. There are always ups and downs, and let’s be honest, when people take their vows, they are never thinking that the “in sickness” part will ever come to pass. We are all the heroes in our own life-stories, and as such we never expect truly bad things will happen to us. That’s not necessarily a bad thing; it’s simply how human beings manage to get through life without letting every setback completely derail us. So I wake up every day and try to be a better person than I was the day before, knowing that there’s no way I will ever reach perfection in my marriage or in any other part of my life for that matter. It’s easy for me to make that effort though, because I really did marry my best friend and because she makes me laugh every single day.
What led you to decide to make your first video?
The first video, “The Slow Death of Compassion for the Chronically Ill,” was a half-hour presentation I gave at the Morris Burner Hotel here in Reno. I was just driving in the car one day when I started ranting out loud to myself (yes, I do that when I’m alone) about how amazingly shortsighted the FDA and the DEA were being with regards to the reclassification/rescheduling of hydrocodone-based pain medications from Schedule III to Schedule II. Someone had sent me an article about it, and my brain just wouldn’t let go of it. So it ended up being this stream-of-consciousness rant to myself in the car, and I immediately pulled over and started making notes on my phone. It took me about a week to polish it up, and about another week to create the Prezi slideshow. Then another week to memorize it. I knew some friends at the Morris, and when I told them what I was working on, they introduced me to the owner of the hotel who said I should give my presentation there, so I did. It was fun, I love speaking in front of people.
I can understand why you wanted to help your wife and others with Crohn’s disease but what made you decide to make videos about other chronic illnesses?
I realized that we couldn’t be the only people having trouble trying to explain what chronic illness is like. I can’t tell you how many times we had to explain repeatedly to people what Crohn’s disease is and why Corina wasn’t going to be getting better in a week or two. So I decided to create a series of videos that wouldn’t be too long, just long enough to give someone who watched them a good overview of what each chronic illness I was talking about was like – not just the dry facts of what causes the disease/condition, but how the symptoms feel. My goal with each video is that hopefully I am able to articulate the symptoms well enough that whoever is watching will be able to relate what I’m saying to an experience that they have had, so that they can in some small way put themselves in the shoes of the person they know who has the condition they are learning about. That’s how the “Feel This Pain” series came to be.
What have you learned while making the videos?
There are far more chronic illnesses out there than I ever would have guessed. I hadn’t heard of most of them until I started researching them for the videos. I’ve also had some of my faith in humanity restored by the amazing people I’ve met while doing this. So many support groups have welcomed me in; so many individuals have willingly shared their experiences with me so that I could better explain what they go through on a daily basis.
Do you have a favorite video? Does Corina?
Corina really likes the new music video (The DEA Song), and she loves when I rant and get a bit feisty, so her favorites are the “Dear Healthy People” series. I like all of them, some more than others though. Truth be told, I’m never 100% happy with any of them, and every time I watch them, I just see something I could have done differently or better, so I don’t go back and watch them again and again. You can really see a change from the very first of the “Feel This Pain” series (Crohn’s) to the newest one on pudendal neuralgia, so that’s what’s important, I guess, that I am hopefully getting a little better at this with each new video I do.
I guess my favorite will always be the very first one, because it was filmed in front of a live audience and I love public speaking. The one I’m most surprised by is the Feel This Pain on Complex Regional Pain Syndrome; that one just took off, and I couldn’t tell you why. It’s at 19,000 views and still climbing. The first music video, “I Live in Chronic Pain,” is at over 18,000 views on Facebook. I know these numbers are not anywhere near being viral, but it’s still very gratifying (and crazy!) to think that tens of thousands of people have seen some of the things I’ve created.
Congratulations on being nominated in 2014 by WEGO Health Activist for "Best In Show – YouTube" and "Advocating for Another" Awards.
Thanks! That was really amazing to me, because at the time I had maybe done five videos, total.
How many videos have you published?
Forty-three and counting. The next one is a “Feel This Pain” on Sjögren’s.
Tell me about your different series of videos. (Dear Healthy People, Feel this Pain and Ken Questions)
“Dear Healthy People” is my chance to just be feisty about things that I feel should be common sense when it comes to chronic illness, like not telling people they don’t look sick. They are fun because they don’t take a lot of time to make, there aren’t any fancy animations or graphics, editing them together is a snap. “Ken Questions” was me trying to branch out into topics related to chronic illness but not necessarily focusing on one illness in particular. “Feel This Pain” is where I try to explain different chronic conditions and get people in the right mindset to empathize with what the chronically ill are going through. I also have the “Pain Nation with Ken McKim” series where I highlight the efforts of other chronic illness advocates.
What kind of responses have you had from the Chronic Pain Community?
Almost everyone has been very welcoming and supportive. You can’t please everyone though, and some people have definitely taken the time to comment or write to me when they feel I left something out or that I did a bad job or wasn’t accurate with my information. What keeps me doing this, though, are the messages I get where someone has shown their spouse/friend/family member one of my videos and after seeing it that person had an “Oh, wow…” moment where they finally got it. That makes my day.
You have been quoted as saying that you "believe that contrary to popular belief, the chronically ill are not all drug addicts." Tell me about your new video “The DEA Song.”
The song came about because I wanted an upbeat, sarcastic way to comment on the absurd notion that the chronically ill are de-facto pill junkies. There’s no “epidemic” of opioid overdoses, other than the one that has been manufactured to play on the public’s fears and stereotypes of who the chronically ill are as people. The most recent overdose statistics I can find based on the CDC’s statistics are from 2010, with the number listed as 16,651 deaths out of approximately 201 million opioid-based prescriptions dispensed. Less than 1% does not an epidemic make.
What we do have is a severe lack of empathy in this country for the chronically ill, perfectly illustrated by the stats I cite in the music video about our veterans being hung out to dry by these DEA regulations governing the prescribing of opioids. A complete lack of societal compassion has led to the proliferation of abusive and ill-conceived measures enacted by the DEA on a national level and by other high-ranking political officials at the state level in places like Florida and Kentucky. These policies are allowed to exist because we have created a society that is completely uninterested in news about people dying of Stage 4 cancer being told “no” by a pharmacist when trying to fill a perfectly legal prescription for pain medication. Our priorities are so completely out of touch. A perfect example; mothers can get fired up about an action figure from the show Breaking Bad being sold at Toys R Us and rally enough signatures on a petition to get that toy pulled from all their stores nationwide, and their efforts get plenty of coverage on the national morning shows like Today and Good Morning America. There are, however, people being forced to die screaming in agony in this country, and there is no national coverage of it at all. It’s sickening.
You can find more about Ken's projects at the following links:
Melissa Swanson is a chronic pain patient, advocate, and author. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 14,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice." She's a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.