Invisible Not Broken - Chronic Illness Podcast Network

Website/Blog, Twitter, & Instagram Handle

www.stefanalxndr.com, @stefanalxndr (Instagram / Twitter)

Name *

Stefan Weiner

What is your disorder? *

Central Sensitization Syndrome

At what age did your disorder become a daily issue? *

22

Who were you before your illness became debilitating? *

I was a recent college graduate, ready to start my career as a performing and touring musician. I was also recently out as gay, beginning to explore the gay dating scene in New York City.

What would you do if you were not dealing with your invisible illness? *

I am finally able to live life without limitations. It's very important that I stick to my regimen, moderate and modify activities, but I have to see myself as capable of anything, otherwise I am putting my phantom pain in control.

What would you like people to know about your daily life? *

I am still dealing with daily chronic pain, which manifest in various parts of my body, especially my arms and my throat. Through my rehabilitation, I have learned to treat it as merely a sensation. I understand it to be a faulty signal from my brain and one that does not require any intervention besides cognitive behavioral therapy strategies, mindfulness meditation, and deep breathing.

What would make living and moving in the world easier for you? *

Now that I have all the knowhow from the Mayo Clinic program and two years of practice with the protocol, I truly can't think of anything that would make life easier for me. I have to accept that my symptoms will come and go, but I am not supposed to change how I live my life or the things I do as a result.

Do you have any life hacks? *

My life hack is the same as my coping mechanism, mentioned below. Diaphragmatic breathing is power stuff!

What kind of support do you get from family or friends? *

My family couldn't be more supportive of me. For 4 years, they listened to me vent on an almost daily basis. My mom truly shepherded me through the experience: doing research for me and making suggestions, bringing me out of my lowest points of despair, and helping in any other way she could. She is a social worker and licensed family therapist, so she always seemed to know the right thing to say at any moment. Both my parents accompanied me on my first diagnostic trip to the Mayo Clinic, taking notes through every appointment. After the pain rehab program, they both continue to remind me of all the things I learned there and all the negative thought patterns I have to avoid to continue my healing process. With friends, things were more challenging. I didn't want to feel like I was burdening people or bringing along with me for the rollercoaster of new diagnoses, new treatments, and ultimately failures. Only my closest friends knew what I was going through. Now that I'm finally going public about my experience, I'm seeing how many people had no knowledge of what I was going through.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Of course, I certainly had people suggest "couldn't this all just be in your head?" This response was part of what kept me from telling people about my condition. Without a diagnosis, I couldn't give people a name for what I was going through, and without one it felt like they didn't believe me. The worst thing anyone ever said to me in response to telling them about my experience was "well, welcome to adulthood," but this type of response was rare and mostly people were sympathetic, even if they didn't know how to help or what to say.

How has your chronic illness affected your relationships? *

My illness has definitely made it harder for me to be vulnerable with partners. It's likely a large part of what's kept me from entering a longterm relationship. In 2016, 3 years into not being able to play music, my illness pushed me to explore casual sex, trying to fill that void. Ultimately it was a good experience, but I understand it now to have been a way for me to have physical contact without the vulnerability necessary for true intimacy.

Is there anything you are afraid to tell people in your life? *

At this point, I'm pretty much an open book. However, the one topic I still struggle to talk about are the suicidal thoughts I began to have in late 2016. I had tried every interventions that my dozens of doctors had suggested, and I didn't know where to turn next. A life without music, with such limited use of my arms and my voice, felt like no life at all. I never made any plans to follow through with these thoughts, but it's still hard for me to acknowledge that I had them.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I found that doctors were always confused by me, but only some treated me like I was exaggerating or making it up. They ultimately tried everything they could, but were unsuccessful until the doctors saw me at the Mayo Clinic. Of course, those doctors understood exactly what I was going through. Now that I have a name for my diagnosis, I feel much more respected by doctors. I've come to appreciate that my identity as a college-educated, white cis man meant that doctors were more likely to respect me, as unfair as that may be. I can only imagine what this experience would have been like as a woman, a person of color, or a trans person.

What is your best coping mechanism? *

Diaphragmatic breathing! We were taught this technique at the Mayo Clinic in order to reduce our fight-or-flight stress response to pain. By doing so, this technique actually reduces symptoms.

What are you the most concerned about and the most hopeful for in the future? *

I hope that I can continue to make strides with my rehabilitation and not fall into the old patterns that kept my symptoms central for so long. Ultimately I'm thankful for this experience, so that I can use my growing platform as a performer to highlight the associated issues and maybe give some support to people that hear my story. I can't wait to see where my career takes me now that I'm able to perform again and make new music. I couldn't be more excited for the future!

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I definitely want to talk about the effect my experience has had on my music and my overall message as an artist. This was truly the most unexpected transformation I underwent as a result of my medical journey

What is the hardest and/or best lesson your condition has taught you?

My condition taught me how to find a silver lining to almost any negative experience. When my arms hurt too much to play guitar, I learned to write music in a new way. Then when my throat hurt too much to sing, I spent the time away from music learning so much about the world and the injustices suffered in America and abroad. My whole experience made me so much more compassionate and empathetic. It made me a better listener. Now, I can apply all this to whatever challenges I may confront in the future.

!