This Injustice is Deadly—But Your Choices Can Turn the Tide

By Jon Nelson, One Mind Lived Experience Council Member

Why do I despise the stigma of mental illness?

It’s unjust. It promotes needless suffering. It’s deadly.

The stigma of mental illness provides a glimpse into the worst parts of humanity.

I have zero time for that. Good humans are all I have time for. 

That and sticking up for millions of people and their caregivers that are the direct recipients of this abuse.

I like to think of things at the highest level.

Here is the process for a societally acceptable disease. 

A person gets a disease they didn’t ask for. Society feels empathy for that person. Society takes care of that person and their family. Society supports and grieves with the family if the person dies. 

Here is the process for a non societally acceptable disease, such as serious mental illness (SMI).

A person gets a disease they didn’t ask for. Society judges you. Society shames you, Society mocks you, Society talks behind your back. You isolate more. You self medicate more. Your caregivers get minimal to no support. You avoid seeking treatment so you aren’t labeled and ashamed even more than you already are. You die. AND then after you die society now transfers that stigma onto the family members so they now get to be shamed for the rest of their lives. And since that family 99.9% of the time doesn’t get a life insurance payout, they bear the financial brunt of the death stigma has brought them.

THAT is the literal reality of the biggest public health crisis we have right now. We don’t need millions of dollars to fix this crisis. It can be done for free. With no money. We just need common sense. We need empathy. We need kindness. 

I lived in this abusive reality for a decade. I know it well. I was diagnosed with major depressive disorder in 2012. This very quickly turned into treatment-resistant depression. My medical journey included over 10 medications, 2 residential treatment programs, 3 partial hospitalization plans, 3 intensive outpatient plans, psychedelics, 36 sessions of transcranial magnetic stimulation, 11 rounds of electroconvulsive therapy and fortunately a clinical trial for deep brain stimulation that saved my life. 

I live with 22,500,000 electrical pulses to two broken portions of my brain. 

Electricity is my medicine. 

All I have is a brain disease. 

I am living a bonus life.

And I am fired up. 

Thanks to the NIH BRAIN Initiative, neurotechnology saved my life. Scientists saved my life. Researchers saved my life. Engineers saved my life. Clinicians saved my life. Empathy saved my life. Kindness saved my life.

But our culture doesn’t provide enough respect for mental health science, and stigma plays a major role. It seems like common sense to increase funding to exceptional life saving programs like the one I benefitted from – yet the opposite is happening. How does that make sense in any way, form or fashion? This isn’t a political debate. This is about advancing science and research to save the lives of human beings in this country. Governments are set up to provide essential services, maintain order and protect citizens. That definition doesn’t translate with slashing what is arguably the most needed funding source to advance science and limit human suffering. Why isn’t psychiatric science receiving the support it deserves–could it be because society doesn’t see the people it’s meant to help as fully human?

Let me offer you examples of how out of touch with reality too many people are in regards to the stigma of mental illness.

Listen to how people talk about taking anti-depressants. It’s not common for people to talk about taking them, but it’s the only medication people do talk about, and when they do, they clarify that they are on a “low dose”. Why do they feel the need to proactively qualify that? 

STIGMA.

Now, let’s look at how society views caring for different parts of our body. 

If you break your arm you immediately go to the doctor and get it fixed. 

If you have poor eye sight you go to get your eyes checked. 

If you find out you have cancer you immediately put a treatment plan in place. 

If you have a problem with your mind you CAN’T get that fixed. Society doesn’t approve, Society rather prefers to set up every obstacle possible for you to suffer and die.

There is no hesitation stating that you are going to a dentist, PCP or eye doctor. Why would there be? It is logical. There is absolutely hesitation when, God forbid, someone mentions to you they are going to a therapist or a psychiatrist. 

I’ll never forget several years ago while watching a telehealth therapy commercial one of the major selling points they used was “you can now avoid those awkward waiting room moments.” 

Are. 

You. 

Kidding. 

Me. 

They are a therapy service literally promoting stigma as a selling advantage. 

That is a business with no soul.

How many times has a person diagnosed with Parkinson’s Disease been told, “Snap out of it? What do you have to have Parkinson’s for?” 

That would be absurd. They are treated with dignity and empathy. They are treated exactly how you should be treated when stricken with a brain disease you didn’t ask for. 

The same procedure I had in my clinical trial of deep brain stimulation is also done for Parkinson’s disease. A different portion of the brain is stimulated with electricity and the tremors stop immediately. Both Parkinson’s and SMI have inactive portions of the brain that need stimulation, yet, they are viewed totally differently. It is complete hypocrisy. 

Judgement is all we get with SMI. We are questioned, labeled, judged and ostracized for a brain disease we don’t ask for – just like every other disease. Why does this happen? 

STIGMA.

I can’t think of human beings that need more love than those whose souls are being ripped from their body. Whose minds are being ravaged. Whose life has turned upside down. Whose family is scared. But in my experience, society’s answer to this is to throw massive buckets of gasoline on a fire to exacerbate more suffering and death. 

Serious mental illness can kill you. To me, that felt like the goal of the disease: Ruin your life and kill you. The brain disease takes full control over your body and mind and leads you to end your life. 

But society holds such prejudice that even the response to suicide is judgment. “Can you believe he did that to his family? That is so selfish.” So for those who judge people for a brain disease they didn’t ask and then continue to judge them after they die I have a simple message: you are an accomplice in their death. People who have died by suicide are the strongest human beings on the planet to have lasted as long as they have. So many of them would still be on this planet if we actually provided an environment of love over exclusion.

Yes, there are wins with stigma. The younger generation is leading the charge to be more open about mental health but my take is the older you are the far more stigmatized you are. In some cultures you can’t even talk about mental illness. It’s absurd but it happens.

How do we solve this?

One of the positives of living through hell and coming out the other side is I now have a superpower to give back and make a meaningful difference. It is the power of lived experience. It provides me an opportunity to channel my inner trauma from this horrific disease into a productive way to make change.

Involve lived experience across the board in decision making. It doesn’t matter how many initials you have after your name. 

Lived experience has the power to see what scientific and clinical expertise alone can’t see. 

Lived experience should be the most important seat at the table.

Why doesn’t this happen? In my opinion it is due to arrogance in the healthcare space. I have seen arrogance take its toll on corporations and institutions, and it frustrates me… I can’t begin to tell you the amount of times I do speaking engagements and people within this world come up to me and say, “I’ve never met a patient before; that was fascinating!” Wow. If Boeing was building a brand new jumbo jet, the first people they would speak with are platinum frequent flyers because it makes 100% sense. Too often in healthcare initiatives, patient voices are forgotten. Cultures foster hypocrisy, yet again. 

As a member of One Mind’s Lived Experience Council, I’m proud to serve for an organization that honors lived experience as a core part of its mission. Thanks to One Mind, I’ve been a key part of discussions to change the future of mental health, including to dispel stigma. This inclusion feels empowering, and is necessary to make the world the way it should be. 

It’s very black and white. It’s your choice.

Choose prejudice, discrimination and the deaths these perpetuate, or choose empathy and kindness.

Sounds simple, doesn’t it? I hope you will make the right choice–again and again. Make your choices a model for those around you. Because human lives–no doubt, of people you care about–are in the balance.

Pulverize the stigma. 

Show empathy. 

Be kind. 

Save lives.