“The most daring thing to do with your life is to create stable communities in which the terrible disease of loneliness can be cured.” -Kurt Vonnegut
Pay attention ultra-politically correct, left-wing, patient advocate judge and jury types because this is going to sting. White, heterosexual, privileged, so called ablest males such as myself feel loneliness too. I want and seek a stable community just like you do. I want to be included (shocker I know), I want to learn, I want to give to those in need, and I want to receive love and support for my pain just like you do. However, every time you PC judge/jury types call me an ablest simply because you don’t like my gender or claim I’m being “to CIS and that’s making you uncomfortable” please know you are the reason there are very few males willing to participate in online patient advocacy communities. You are not advocates; you are left-wing cyber bullies that have figured out you can use sexuality and gender as a weapon. O.K., enough with my soap box, here is my story as a heterosexual, privileged, ablest male who attempted and failed at finding a chronic pain/arthritis community to give and receive love and support in.
Around 2009, I began to experience horrible pain and swelling in both of my hands. I’ve been trying for the life of me to remember if the pain came on gradually or suddenly, I have no idea. In 2010 my GP doctor finally diagnosed me with Gout in my hands. Being like most people, I thought Gout was only when your big toe hurt. Dr. Google informed me that about 5 to 10% of patient’s present with Gout as I was. Since I had the distinct honor of being able to claim that I had fallen off a cliff and lived I could mentally comprehend that I had a rare presentation of Gout. However, this was short lived.
While earning a second degree in accounting I had the honor of meeting a rheumatoid arthritis patient named Stephanie. At the time, Stephanie had beeing fighting her disease for more than 10 years. Her symptoms first appeared in junior high while playing soccer, as a fellow soccer play I could immediately bond with not being able to play. Ironically, the first time I ever saw Stephanie on campus I mentally played which joint was hurting her the worse because she was limping at the time. My guess was that she was a fellow hip dysplasia patient, I lost my mental game but gained a new friend so I still won.
Alright Alan, back on topic. After spending many hours discussing accounting and arthritis symptoms with Stephanie, I had become convinced that my Gout diagnosis didn’t explain how my entire body was feeling, something else beside the post traumatic osteoarthritis and hip dysplasia was going on in me. Stephanie had been battling this horrible disease since junior high which meant she had a wealth of knowledge, experience, and understanding as to why I was beginning to doubt my Gout diagnosis. I will be forever grateful for our talks Stephanie; I hope you know that!
Stephanie had created a website who I’m not going to list since these self appointed judge and jury types have threatened people I know in the past. Stephanie turned her love of helping others, writing, exploring new ideas, and marketing into a community. It was amazing the transformation this new area in her life brought her. Being lazy and unorginal, I decided one Friday night to create my own blog, this one, in which I would try and follow in Stephanie’s footsteps in developing myself so I could become unlost in my patient journey.
After learning how to set up a website, I knew it was time to go exploring for patients with similar symptoms as mine in hopes of continueing to learn and improve myself. It was time to fully embrace the world of social media. Enter Christine. Christine had created one of the most powerful youtube video’s I’ve ever seen regarding her rheumatoid arthritis and life. To this day, it still pulls at my heart strings.
Two things about Christine’s life story immediately intrigued me. First, her honesty and straightforwardness was intrigueing. At this point I still thought of social media as a pop culture tool needed to get famous in order to be famous, i.e. the Kardashians. Second, and equaly as important, she was a fellow athlete. Although Christine’s love was running and mine was skiing, I knew immediately that we would speak the same language. If Christine was a classic pianist who knitted I would have probably moved on, I simply can’t relate to that language or life. At that moment in my life I didn’t need new people in my life, I need new people who I could relate too on some level quickly because the unexplained physical pain was quickly becoming unexplained mental pain too. I was becoming impatient and selfish, I needed answers now, not piano stories or knitting lessons (no offense to those who play piano or knit, there is much knowledge in this world and I haven’t had a chance yet to learn about your passions) Luckily for me, Christine returned my initial email which led to us becoming fast friends.
Thanks to my new friendship with Christine, I quickly meet several other advocates who were also athletic and woman patients. My online social group was quickly growing with female patient advocates who had been battling some form of the 120 different types of arthritis from the rare to the more common rheumatoid arthritis for a majority of their lives by climbing mountains, being gym rats, competing in triathelons, or running marathons. The life I wanted! I understand the mentality of “we do these things simply because they are there.” Years of experience with this disease and specific symptoms has been my only search criteria I’ve ever used in my entire patient life. Being drawn to athletic types only makes sense considering I grew up in what PC liberals would call a white privileged world of soccer, tennis, baseball, basketball, skiing, rock climbing, mountain biking, and road biking. Contrary to what those that are fond of accusing me of ableism or sexism might say, my entire search for fellow patients came from who I meet the day before and not based on gender or “physical attractiveness”. Guess what liberal Kirsten PC types, physically active people who are positive about life make great advocates too.
For those of you that don’t know, Ableism means discrimination in favor of able-bodied people. An able-bodied person means healthy people. Think of ableism as racism in the health area. It definitively exists don’t get me wrong! I’ve had my fair share of people accuse me of faking my pain or slamming a door in my face because they thought I didn’t need crutches. Some refuse to understand why I take a lose dose chemotherapy drug called methotrexate; many think I’m a drug addict because I use opioids on a regular basis as part of my pain management plan.
Outside of the social media zone, especially Twitter, I believe ableism is only a part of any patient’s life. Many, if not most people simply don’t have experience with some of the more serious forms of this ridiculous disease. Their intent towards an arthritis or chronic pain patient is pure; they simply don’t have a knowledge or experience base to draw from when dealing with someone like me with this invisible disease. I still fall into this category despite my experiences at Stanford University or online!
For example, friends I’ve had since junior high still ask me questions that would be considered incredibly ableist by many. This doesn’t mean we are not friends, it means I’m the first one in our group to get sick under the arthritis and autoimmune umbrella. I’m still learning. Despite my one time active engagement in the #curearthritis community, the amount I don’t know is still larger than what I do know and I was once considered an expert e-patient. Instead of accusing my friends or I of ableism, maybe it’s time to step up and admit that you are failing as advocates because not enough people have heard or understand patient stories. If most of your “advocacy” consists of calling others ableist please know that this yet another example of why there are not many males in the patient communities. Once again you are using your gender or sexuality as a tool for cyber bullying and story conformity instead of celebrating each individual’s unique experience in life.
I’ve long advocated that my disease doesn’t care about gender so why should I? A patient’s story was the most important part about being a patient, not gender. Turns out I was wrong, so wrong. Gender plays a huge rule in patient communities, at least in the arthritis and chronic pain communities, but not in the way one might think. Gender goes back to old school norms of a 38-year-old male can’t converse with a 21-year-old female without it being sexual in some way for example. In this scenario, years of experience with this disease by the 21-year-old female means nothing compared to other people’s perceptions of intent. Social media is advertized as a great medium to bring people together, what they don’t say is only if it conforms to other people’s social norms. I didn’t care that I was older than Christine and Stephanie, or that I was a boy and they were girls, the only thing I cared about was learning and stealing knowledge from them based on their vast experience with this disease. I wanted to cope better today than I was yesterday thanks to the experience of knowing these remarkable patient advocates. Being an e-patient advocate scholar should never mean that you are done learning, quite the opposite in fact, you have only begun the process of learning.
As I’m sure you have figured out now, I am damn angry with these PC liberal, Kirsten type, left wing, judge/jury types. I was once a happy, laid back, skier who enjoyed being an advocate immensely. Now I just hate myself. My hatred has gotten so bad that I recently turned down an all expense paid opportunity to go to Dallas as a consultant for a drug company, I was going to be paid $500.00 for one day of work. Advocacy simply isn’t worth it anymore for me simply because I know many #curearthritis community members leaders don’t like me thanks to one social norm mistake I made but can never apologize enough for since I am a white, privileged, ableist, male inflammatory arthritis, rheum, post traumatic osteoarthritis, PTSD, depression, degenerative disk disease, Gout, bilateral hip dysplasia, chronic pain, bulging disk, pinched nerve, and nerve damaged chronic patient.
As a white male, inflammatory arthritis patient who also fell off a cliff, which has led to severe post traumatic osteoarthritis along with multiple mental health conditions, I’m never going to find a specific community that mimics my conditions. Thanks to Medicine X at Stanford University, I was able to meet a fellow white male who fell off a waterfall and lived. It is cool to be able to talk to Steve about the many mental aspects that come with falling since the PTSD is rough. However, the judgment and loathing that has come from the #curearthritis and #chronicpain communities has definitely outweighed the good I have done and received from fellow patients like Steve.
I am going to close this post on a positive, at least in my mind. A couple of weeks ago, a fellow chronic pain and hip dysplasia sent me a message out of the blue. This person knew I had been having a hard time mentally and physically thanks to several events over the last couple of months in my life. They didn’t have to take the time or effort to do this, they wanted to because it was the right thing to do. The thing is this person is an 18-year-old female who I meet 2 years ago on Instagram thanks to both of us being born with bilateral hip dysplasia. At the time, we both had undergone multiple surgeries for our condition and bonded because of the chronic pain associated with this condition. For me, this is the ideal patient community. We both have had more surgeries, pain, and doctor’s appointments in our lives than most healthy people will take in vacation time. We both understand the ups and downs of hip dysplasia. Our gender and age played no role in this shared experience; we are just 2 patients trying to help the other remain in the up portion longer than the down. In the end, this is what all patient communities should be about. Patients helping patients is the only type of community I’ve ever wanted to be apart of, gender, age, looks, cookies, sexuality, height, skin color, artistic ability, skiing ability, runners high, cooking chops, TV habits, reading habits, and most importantly, love of doggies and kitties is what made advocacy so much fun.
P.S. All names in this post have been changed to protect them from the Kirsten PC liberal types who have publicly threatened the people I know on Twitter. These people regularly send me hateful messages and I don’t want my friends to experience this.