I knew when I was younger that something wasn't quite right. I remember in college that I really never could sleep. I didn't need to.
As I knew this wasn't normal I sought out the college mental health counselor who suggested I see a neurologist. I had an EEG, a brain scan, which came back clean. I told the doctor that the EEG results must be wrong. He said, "No, you are."
For the next twenty five years I went on with life and my massive ups and downs. I thought it was all in my head and that there was nothing wrong with me.
In 2006 I moved to Boston for a job closer to my mom after my dad unexpectedly passed away. My family stayed in Minnesota while my kids finished school. I flew back and forth between the Twin Cities and Boston every weekend. I had no problem keeping up with this rigorous schedule. At least that's what I thought. I started to lose weight and wasn't sleeping. Because of these symptoms I went to a doctor who prescribed something to help me sleep.
Usually my lows were the worst at the end of August which again brought me to the doctor. She thought I had an August grass allergy and gave me a prescription and an inhaler. Neither of which helped. Turns out it was the declining daylight which was a 'trigger' for my depression.
One night I mixed another medicine I was taking for a familial hand tremor (harmless hereditary shaking) with the sleeping aid. I ended up in the hospital. While there doctors on staff asked about my schedule and why I was taking a sleeping aid. I explained that I hadn't been able to sleep and I had that problem my whole life. But I also had times when I couldn't get out of bed. I wasn't sad. I just didn't care about anything.
With all of this in mind, along with additional testing and interviews it was determined that I had bipolar disorder. Initially it was diagnosed as the less severe type known as Bipolar II. Some things happened in the hospital that provided the doctors with additional information such that they instead diagnosed me with Bipolar I. I was isolated in a 24 hour watch for another week before finally being released.
Six years later I have come full circle from anger and denial to acceptance. To me this is the single most important part of my success (so far) at managing my illness. The problem is that I knew the whole time that something was wrong, but it took the hospitalization to finally get the right diagnosis and the long sought after help I needed.
My advice for others--listen to and trust yourself. It's the same hindsight you hear from people finally diagnosed with other conditions. I wish I had gone for a second and third opinion. I KNEW something wasn't right with me but I just assumed the first doctor was correct even though my gut (and head) thought differently. Adults should go to their family doctor who will hopefully suggest a psychiatric evaluation. And if they don't request it.
If I could travel back in time to 1982 I would find the campus counselor and say to him, "My brain scan looks fine, now what do we do?"
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| Ken Barlow |
Ken Barlow, Founder and President
The Wellstone-Barlow Mental Health Initiative
www.wellstonebarlow.org
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Ken—Thank you for this guest post. You brought up several points that will resonate with readers. Listening to other’s examples as they were diagnosed for a mental health condition makes it real for someone who might be experiencing the same symptoms. When found in a situation similar to yours I think many people isolate themselves not realizing others have gone through an experience familiar to their own. Your words “Listen to and trust yourself,” is sound advice not only when seeking help for a mental health condition but for all medical and developmental conditions whether you are advocating for yourself or for someone else. Doctors are not always right. As a patient or a patient’s advocate we have the right to seek out other opinions. You are making a difference in so many lives. Thank you for sharing your vulnerability and bravery.--Allyson
ReplyDeleteYour story reminded me of my own story and so many of my friends' stories with colorectal cancer. We are supposed to get screened at 50, so many of us who were younger at onset and went to doctors with symptoms were told not to worry about it or misdiagnosed. So many of my friends had symptoms for years and were Stage IV by the time they were diagnosed. There is no excuse for this, but there it is.
ReplyDeleteI, myself, had symptoms which were poo-poo'd (pun intended) by my clinic and so I ignored them, even though something OBVIOUSLY was not right. I finally went back in and insisted that something was not right, got a colonoscopy, and proceeded to have my life saved.
The lesson is universal--not just for mental health. Trust your instincts. You know your body better than they do. Speak up for yourself.
Ken,
ReplyDeleteThank you so much for sharing your story. I am a nurse who works with people experiencing symptoms of mental illness and the stigma they feel at times can be quite a barrier. Anytime someone in the public eye comes forward it can create great hope in the minds and lives of others.
Fantastic blog. Thank you Ken for sharing your words...it was like reading my story only insert the word endometriosis for bipolar.
ReplyDeleteIt struck me the biggest problem in society when it comes to our minds is to forget that actually its an organ just like the rest of our body. People take pills for headaches....so why then is it any different when our brain needs some medical help.
The other very significant issue is the fact people often only talk about mental health when it comes to "illness" or when there is a breakdown. To me this is far too late.
We all need a mental health plan...we should be constantly treating ourselves especially when we are healthy...to be honest this should be our aim to know what works for us and recognise the warning signs or points where getting help is required. Lets talk about what we do to keep ourselves healthy in our mind just as much as our body.
In Australia we are seeing a big interest in Mental Health First Aid which I think is a fantastic step forward in recognizing that it could happen to all of us at any given point of time. It could also happen to our closest loved ones in a time of crises.
What was interesting was looking at how we use words and how we frame an issue in society. I found the language differed on the two websites (USA/Australia) which i am finding intriguing...would love to get some more thoughts on this.
http://www.mentalhealthfirstaid.org/cs/program_overview/
https://www.mhfa.com.au/cms/
USA website key phrases found...mental illnesses and substance use disorders, risk factors and warning signs of mental health problems, treatments, "An understanding of the prevalence of various mental health disorders in the U.S. and the need for reduced stigma in their communities"
Australian website key phrases found...health promotion charity focused on training and research."help provided to a person developing a mental health problem or in a mental health crisis", "how to provide initial support to adults"
"Who should do MHFA training? MHFA training is open to all members of the community, so the short answer is, everyone. It is recommended that MHFA training becomes a prerequisite for all employed in human services."
What I noticed was how we placed people or the person in this situation. The US website seemed to detach the fact that illness happens to people. Are we treating the disorder or the person? I found the approaches on these very similar websites so drastically different - I think the first is the most important distinction that we are helping and supporting people...not an illness or a disorder. We talk about people when we talk about mental health disorders!
I have a problem when we seek to separate them? I am my mental health, who I am is wrapped up in how I feel. My mental state is singularly the most important health factor in my life - well that and my bodily functions...we need to ensure we change our perspective to having fit and healthy minds, not just treating when there is a problem. In preference I hope to see Mental Health fitness clubs soon!!! I would love to see people caring more for our "invisible problems" of the mind in a more visual way rather than placing more importance on the outer body!
What I liked most about the US website was the quote "we expect Mental Health First Aid in the US will become as common as CPR and First Aid. It has the potential to reduce stigma, improve mental health literacy, and empower individuals – the benefits are limitless!" And that involves placing the "human" first.
I liked the term literacy as in a way we need to learn to read ourselves just as much as other people.
So a thought for your next professional development...or for personal gain. Maybe we all need a certificate. When the $$$ are flowing I will be getting one. (I am not endorsing either organisation - I just read their websites)