Jon Nelson: Five Things I Wish Someone Told Me When I Was First Diagnosed With Mental Illness

An Interview With Stephanie Greer

You have a brain disease. You didn’t ask for this. People that stigmatize you are ignorant and stupid. You are one of the strongest people I know to live with this maniacal condition searching for even a twinge of relief.

Navigating the complexities of mental illness can be a solitary and daunting path for many. The initial diagnosis often comes with a deluge of emotions, confusion, and an overwhelming sense of uncertainty about the future. It is a pivotal moment where guidance and wisdom from those who have walked this path before can make a significant difference. As a part of this interview series, I had the pleasure of interviewing Jon Nelson.

A healthcare communications executive in the biopharmaceutical space for 20+ years, Jon Nelson is a tireless advocate and voice for those who, like him, suffer from mental illness. Jon works very closely with the bio pharma industry, serving as a strategic advisor for several nonprofits including One Mind, Mental Health Collaborative and Motif Neurotech. Jon is also a voice for mental health at national forums including a recent NIH congressional briefing on a 10-year brain research initiative, where he seeks to further educate people about the crippling disease of mental illness.

Thank you so much for joining us in this interview series! We really appreciate the courage it takes to publicly share your story. Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?

My name is Jon Nelson, and I’m a lived-experience expert in mental health. I was born and raised in Pittsburgh, PA, and currently live with my wife Barbara and three children in Newtown, PA. My battle with mental illness began in 2010 when I was first diagnosed with depression. Like millions of others, I’ve suffered from the excruciating effects of mental illness and depressive disorder — and the ugly stigma that accompanies it. My journey has been long, arduous and taxing both mentally and physically, marked by dozens of treatments that did zero to alleviate my suffering. My journey, however, got flipped on its head in the best way possible with a groundbreaking procedure known as deep brain stimulation (DBS), which literally saved my life and enabled me to advocate for others who not only suffer from mental illness and depression, but who also endure the stigma associated with it.

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

Oh, I have so many. My kids make fun of me because I always say let me teach you a life lesson. They roll their eyes and think, “here we go again”. I want to send them out into the real world ready for life!

When we had our first child the Pediatrician said to us “you can’t parent temperament”. That may be the most truthful insight of all time. I have three children. I love them tremendously but they could not be more different. You can’t change their temperament. You have to parent each kid individually to meet them where they are to get the best out of them.

I recently started my own consulting business and a colleague said to me recently the only thing better than making your first dollar is turning down your first dollar. Brilliant line and perspective.

Be yourself. Think of your favorite friends and colleagues in life. I can guarantee the ones you are closest with you can purely be yourself around. There is no effort. You are you. Surround yourself with those people.

I have never liked the statement “do for your living what your passion is”. I couldn’t agree less. You first need to determine what lifestyle you want and then find a career that can make that lifestyle happen. If that happens to not be your passion that is fine. Then you work to support and do your passion in your free time.

I live my life with the famous Maya Anjelou quote, “that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” That is the most important thing in life. What impression do you make on people and how did you make them feel?

Let’s now shift to the main part of our discussion. Can you share what your journey with mental illness has been like? Can you share the moment you first realized what you were experiencing was a mental illness, and how that initial understanding evolved with time?

A little over a decade ago I started feeling very low. I was losing confidence and isolating myself from friends and family. I started seeing a therapist who stated she thought I had Major Depressive Disorder (MDD). That made no sense to me until I looked up the diagnosis and it explained what was happening to me perfectly. I then went to my Nurse Practitioner who prescribed me my first antidepressant. That was the start of an extremely difficult journey to find relief. I quickly found out that I was treatment resistant to any therapeutic intervention.

I tried over 10 medications, attended two, 30-day residential treatment programs, 3 partial hospitalization plans, three intensive outpatient programs, transcranial magnetic stimulation, electro convulsive therapy and ketamine. Nothing worked. The only consistency was the hell that was growing stronger inside my body.

My two primary symptoms were a constant desire for death and the physical sensation of dread circulating through every cell in my body. I could feel the MDD everywhere. It consumed my entire body and made me exhausted. A great day was only sleeping 14 hours and having two naps. If I was able to brush my teeth or shower it was a Herculean effort. I had non stop suicidal ideation. It was as common as breathing. The only thing I desired was death. I was euphoric for an accidental death because that would answer all of my problems. My family would be left with life insurance, their dad and husband would have tragically died and I wouldn’t have to suffer anymore.

My life was saved on 8/22/22 after undergoing deep brain stimulation surgery out of Mt. Sinai hospital in NYC as part of a clinical trial for treatment resistant MDD. From the moment they turned the device on and started sending 22,500,000 electrical pulses to two specific portions of my brain I was instantaneously in remission from the disease. Electricity is my medicine. I am proof this is a brain disease. I am proof to the millions of people in society that promote the asinine stigma of mental illness they are 100% incorrect. Mental illness is a brain disease. It is a disease nobody asked for just like every other disease.

Was there a turning point for you when things started to change for the better? Can you please share a story?

The moment the device was turned on I was cured. Literally. Flip of a switch. I haven’t had a single suicidal thought since the surgery and the hell within my body is gone. I can feel life again. I can enjoy normal human pleasures. I desire going on vacation. I desire spending time with my family and friends. I desire intimacy and affection. I want to live. I want to grow old.

There are several before and afters since the surgery. My voice is different when I am not sick. My skin complexion is back to normal and my face doesn’t droop. I can feel pain again too. I got a huge tattoo on my arm to commemorate my disease. Being in nature relieves symptoms of depression, so I put a huge tree and nature scene on my arm. It took four days to get the tattoo and I didn’t really feel it. Getting it was just a neutral feeling. It wasn’t pleasant or unpleasant. I had to go back to get it touched up after the surgery and I could feel literal pain again. I had to have her stop multiple times during that appointment due to the pain and sensitivity in some areas.

I will also never forget the first time I went into the ocean after my surgery. I could literally feel the water all over my body. It felt pleasant and enjoyable. I could also walk my dog again. I could have friends over for a fire pit night. I wanted to laugh again.

Who are some of the people in your life who have been on this journey with you? How have they either helped you or made things harder?

My wife, Not only is she the most beautiful person I know on the outside, she has the most beautiful heart and soul too. The only person this brain disease was worse for than me was my wife. She had to also take on the responsibility of being a dad, husband and caretaker. Everything was on her and due to that absurd stigma she had to do it mostly by herself. Imagine the beautiful display of humanity when someone gets diagnosed with breast cancer. EVERYONE rallies behind that person and family. Meals are taken care of and there are rides to every doctor appointment. There is a societal hug for that person. Now imagine the exact opposite for mental illness. Not only is your mind being warped into hell, but you receive almost zero support. It is horrific.

My father was also a huge support. Ten years ago when I first became sick, he was someone that actually promoted the stigma. He told me I had a family to take care of and to get over it. Well, he did a 180 when he saw the reality of the disease. He was by my side for the entire journey and was the reason I found the clinical trial. He is an amazing dad. I hope to be as good of a dad to my kids as he is to me.

My close friends and colleagues were also a huge support. My boss at the time of my first collapse helped keep me alive. She helped me get into my first treatment facility and is one of my best friends for life. She didn’t do anything other than be a loving and kind human being. She showed empathy, kindness and love.

How did your personal relationships and social interactions shift following your diagnosis, and what advice would you give to others navigating similar changes?

All I wanted to do was be left alone. I wanted to isolate myself. I didn’t want to go on a beach vacation. I wanted to go up to my room and turn the AC on super cold, blast my ceiling fan, wrap myself in my comforter, and sleep. If I had to get up to use the bathroom, I was annoyed because I wasn’t able to sleep for that minute. Sleep was perfection. Sleep was a relief. Sleep was an escape.

A huge win for me was brushing my teeth or taking a shower. I knew I was supposed to eat healthy and exercise, but all I could do was over-eat, isolate and be irritable. That made me feel worse about myself. I was unaware at the time but that is a common symptom of the disease. I wasn’t choosing to behave that way. It was called avolition and it had a strong hold on me.

What are 5 things you learned from your journey that you think other people navigating life with mental illness would benefit from knowing?

1. You have a brain disease. You didn’t ask for this. People that stigmatize you are ignorant and stupid. You are one of the strongest people I know to live with this maniacal condition searching for even a twinge of relief.
2. The disease wants you to remain quiet. It wants you to remain isolated so it can grow stronger and more intense and ruin every inch of your being. Don’t let it win. Ask for help. Talk about it with loved ones and friends. Seek all medical treatments possible and keep fighting for relief.
3. Suicidal ideation is normal. When you live with hell in your body, wanting to die is a common outcome. If it progresses into intent or a plan, that simply means the disease is growing stronger. Make sure to raise your hand and ask for help. If you don’t, the disease will win and accomplish its goal of murdering you. To caregivers or friends of someone suffering through the hell of SMI, ask them if they are suicidal. That is not triggering to ask. It was the opposite. It was comforting to me because I felt someone could relate to the hell I was going through. They got it. If the answer is yes and I have a plan or intent they help them get to the hospital. If they don’t have a plan just let them know you are there for them at any time or place and if it gets to that point to give you a call. Let them know you are a safe resource for them.
4. Avolition is the medical reason you can’t do anything. I never heard that term or explanation until the morning of my deep brain stimulation surgery. I knew what I was supposed to do with diet and exercise but all I was good at was sleeping, overeating, isolation and using substances to get relief. Brushing my teeth or taking a shower was a huge win for the day. That is a primary symptom of serious mental illness. But not knowing about avolition makes you think you are choosing this lifestyle. You are not. Avolition makes it almost impossible to do routine activities.
5. Let people help you. It is such a maniacal disease that I would be upset when people I felt abandoned me but yet I was also annoyed if people wanted to help me. So it was a double whammy. Irritability and frustration for both sides of it. There was no win. Even if it’s just having someone stay with you in your room to talk for a bit, that is a win. You are not alone for that moment. Find any moment of joy that you can. It is tough, but seek out those moments of joy. Ask someone to help you accomplish or find those moments of joy.

How has living with mental illness affected your relationships, both romantic and platonic? Any advice for others who are navigating relationships while managing the condition?

When I was sick, it was almost impossible to find joy in any relationship. I was irritable and tired all the time. I didn’t want to be around anyone. Intimacy was a massive chore. I forced myself very infrequently to be intimate in order to make my partner know I still loved her but it was excruciating.

I turned into a bad friend. I went from being the main organizing extroverted buddy to a shell of myself. I never initiated plans, and when I was forced to do something I would lie last minute to get out of it or use substances to help me survive through the event for even something as simple as going out to dinner with friends.

My advice is to find moments of joy somehow. A one percent lift in a positive direction for your mood is a massive win.

Reflecting on your journey, what do you believe are the common misconceptions about mental illness that could be dispelled to support newly diagnosed individuals better?

I despise the stigma of mental illness with a passion. I will do everything in my power to pulverize the stigma until the day I die. The people that support and promote the stigma (even if just inwardly) are directly responsible for death. They are ignorant and stupid. A simple mind shift will save millions of lives. All you need to do is treat a human being with mental illness the same as you would for every single other disease people are diagnosed with that they didn’t ask for. Show empathy. Be kind. Save lives. 99% of the time I had the audacity to tell someone I had MDD I would just be stared at. They wouldn’t say anything. They would just look at me. It made me feel awkward and worse about myself. Imagine doing that to someone with breast cancer. You would be a horrible person, yet it is the norm with mental illness. That is the reason mental illness is a leading cause of disability worldwide and the primary reason for suicide. That is the reason those diagnosed with depression on average wait a decade to seek treatment. Stupidity from society is what makes people needlessly suffer and die.

What strategies or practices have you found most effective for managing your mental health, and how did you tailor them to fit your unique circumstances?

While I am currently in remission, I am still very careful with my behavior. I try to stay as neutral as possible unless I am talking about the stigma. I am OK with being angry here and there. Anger fuels me and makes me work at my best. I have stopped drinking alcohol, and I am very cognizant of my sleep. I have started to eat healthier and have even lost 30 pounds. For the first time in decades my first thought in the morning isn’t you are a fat piece of sh!t. It’s a much more enjoyable day when you can start it off feeling neutral about yourself. Neutral is an amazing feeling when you haven’t had it for years. I also try to be present as possible with my kids and wife. I want to spend as much quality time as I can with them.

I am not perfect by any means though. I learned a lot of bad behavior during my illness. I still nap but try not to do it excessively and have not been able to succeed with exercise but I am not giving up and will keep trying. I remain irritable and try to separate myself when I am to not bring the mood down of other people due to my behavior.

Looking back, what is one thing you would tell your past self in the wake of your diagnosis, and what message of hope can you offer to those who are just starting to come to terms with their mental illness?

Get help earlier. You stew in hell for years trying to understand what is going on with you. It makes no sense and the stigma keeps you quiet. Medical interventions within mental illness overall are not that effective, and that makes sense. Imagine waiting a decade to start treatment on your diabetes or cancer. If you were still alive by then it would be very difficult to treat.

I would also have talked about it more to loved ones and close friends and followed through on getting to the Dr earlier to help with medical interventions.

Are there any books, podcasts, or other resources that have helped you understand or manage your condition better?

Brene Brown was helpful to me. I learned about toxic shame in one of her books and it was the first time I heard that term and it explained me perfectly. But overall no I didn’t find anything that was helpful to me. It was too much of a chore to find the help or resources.

What was helpful to me was music, podcasts, comedy and a great series on Netflix. They were healthy escapes for me. I had several unhealthy escapes too but I tried to celebrate the more positive ones.

We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. :-)

I will give you two. Joe Rogan and Howard Stern. I respect them as broadcasters (whether you like them or not, they are excellent at their trade) and their audience is exactly who I want to reach with my very direct, real and factual message about the stigma of mental illness. Brenee Brown would seem like a logical answer but people surrounding her are seeking answers and are believers. I want to target populations of non believers. Plus, I like to swear and both of them will let me do that. We would have great banter and an excellent direct and provocative discussion.

How can our readers further follow your work online?

I’ll soon be launching a website to share my experiences with others and to help save as many lives as possible. I’m also active on LinkedIn and be found at: https://www.linkedin.com/in/jon-nelson-95749837/

Thank you for your time and thoughtful answers. I know many people will gain so much from hearing this.

About The Interviewer: Stephanie Greer, PhD is the Co-founder and CEO of Akin Mental Health — a company dedicated to guiding families on their journey supporting a loved one with mental health challenges like bipolar disorder, schizophrenia and severe depression. Stephanie is passionate about this topic from her own personal experience growing up with a mother who struggled with bipolar 1 disorder and found a path forward to overcome the obstacles and live well. Stephanie’s professional experience includes a PhD in neuroscience as well as design research roles at Hopelab and Apple. Stephanie brings this personal passion together with her world class science and technology background to support families across the US in their personal journey’s supporting loved ones with mental illness. To learn more about how Akin Mental Health is supporting families, visit us at akinmh.com.