Keynote #2 | Hiding in Plain Sight: A Conversation with Makalynn Powell 

Hiding in Plain Sight: A Conversation with Makalynn Powell
Makalynn Powell:
In the film Hiding in Plain Sight: Youth Mental Illness, it’s fantastic film, if you haven’t seen it yet, please
watch it. It’s a very eye-opening, raw perspective on what it’s like to live with mental illness in America,
but especially as a young person. I think that a lot of times we forget that young people go through
things, too. It’s very hard to navigate this world as an adult, but it’s even more difficult as a child
whenever you’re living with mental illness. So please, please, please, watch that film. It’s still available
on pbs.org if you get the opportunity.
I first want to thank the Alliance for organizing the summit and encouraging this extremely
necessary conversation about mental health. It’s still surprises me that organizations ask me to
participate in events like this and think that I have something worthwhile to say, because I’m simply a
person with lived experience. But if I’ve learned anything through this journey, it’s that listening to
individuals with lived experience is probably the most important thing that we can do. Letting somebody
else dictate the policies and the programs that we have in place hasn’t worked thus far, so it’s time to
try something new.
My work in advocacy started when I started volunteering at a program at a maximum federal
facility, so I was working with inmates. I met incarcerated men and women there who resembled people
that I encountered daily on the outside world. The only difference between these individuals and the
people that I experienced was the fact that we called them inmates, the fact that we used a label. We
called them inmates.
I’m going to go ahead and start off really quick by saying, I’ve never had to do this one-person
keynote speaker thing in front of a bunch of professional people. I’m usually sitting in that chair with a
moderator who asks me a specific question, and then I answer that question and then we move on from
there. So bear with me. We’re going to double back really quick.
So I was working in a federal maximum security prison with people who were just like the
people that I met on the outside. They were people from underserved areas who suffered very
traumatic events. They had untreated mental illness. They often suffered from substance use disorder,
PTSD, different things that I saw on the outside. But again, the only thing that made them different is
that we had this label for them and it was inmate. So it was very discouraging to see, but I quickly
realized how important it was to have a conversation about labeling theory, and to discuss the effects
that we often face when society reduces us to a singular life event or a diagnosis.
By outcasting or othering people from vulnerable populations with words like minority or
schizophrenic, we begin to quantify them rather than recognizing and addressing their needs as
individuals. It’s no secret that populations from certain areas or ethnicities or age groups tend to
experience similar hardships, but to assume that a one-size-fits-all course of treatment is the answer is
often more damaging than beneficial. It only reinforces the stigmatization of mental illness and
discourages people like me from seeking help.
So a little bit about me, again, if you haven’t watched the film, please do. You will learn a lot
more than I expected anybody else to know about me, but again, great film. I was labeled as defiant,
disrespectful, and generally a troubled child growing up, when in reality, I was just experiencing
textbook symptoms of bipolar disorder, so low self-esteem, inability to maintain relationships in any
capacity, high highs, low lows, feelings of helplessness, irritability, lack of focus, you name it.
But the adults in my life decided to focus on my outward circumstances. I was a child with an
absent father, growing up in an income-based housing project with a single mother who worked three
jobs to make ends meet. And as a result, I was reduced to that reality, and inevitably fell into a selffulfilling prophecy. I began to self-medicate and eventually found myself in a state-funded facility at 17
years old.
Now that I’m older and understand what an effective treatment plan looks like, I can confidently
say that that treatment center was nothing more than a poorly run daycare center for teens who have
been cast aside and didn’t necessarily fit the mold that our society has built for them. The staff members
were only required to have the equivalent to a high school diploma and basic first aid training. So
essentially, they were not equipped whatsoever to handle the many challenges that we thought we
faced as clients. And of course, my story is very different from a lot of the other clients that were there.
They faced hardships that were far more detrimental than mine. So I can’t imagine how their experience
was, but I’m sure it was a lot worse than mine.
We were completely isolated from the outside world, so we attended school at the facility. We
held group therapy services in our living room, and we occasionally played intermural sports in our
gravel parking lot. So my experience with inpatient treatment being in total isolation, essentially
crippled me. After 11 months, I left treatment and quickly realized that I had become institutionalized. I
was not at all prepared to re-enter society whatsoever.
The only sense of normalcy I found on the outside was when I started to attend Narcotics
Anonymous meetings. And I can confidently say that 12 Step programs saved my life. And I truly believe
that that’s because these are programs that are created by the very people who need them. These are
people with lived experience who had to learn how to live life without using drugs. And they recognize
the value of peer support.
After a year and a half clean, I was finally diagnosed with bipolar disorder, and this meant
starting the very grueling journey of finding the proper treatment. So my psychiatrist and I tried about
seven different medications within a year, and it was very difficult. It was extremely difficult. The side
effects that I experienced physical, psychologically, and mentally were very difficult to navigate at a
young age. We finally got there, and I finally found the perfect combination of medication and therapy
and was stable for about two years.
But of course, I was once again, met with the issue of stigma and labeling. It seemed like the
minute I informed someone that I had bipolar disorder, that was all they could see. My justifiable
emotions and reactions to life were often met with, “Well, have you been taking your meds?” Or
“Maybe you should call your therapist.” And for somebody who was raised by a very, very strong,
independent single mother and was taught to stand up for herself no matter what, being viewed as less
than or weaker was absolutely unacceptable, absolutely unacceptable.
I wanted to completely shed that identity as a recovering addict with bipolar disorder.
Unfortunately, living with a mental illness does not come with the privilege of turning your symptoms on
and off whenever you want. I quickly realized that I didn’t get to choose when and where my diagnoses
presented themselves. So I had to relearn how to be vulnerable and remind myself that I’m not just an
addict and I’m not just someone who often experiences mania. I am Makalynn, and sometimes I have
bad days.
I had to continue to advocate for myself to preserve that stability I had worked so hard for, and
my journey of mental health recovery has been relatively successful. I was able to graduate college twice
and now have the opportunity to advocate, which I absolutely love. Thankfully, I have a provider, a fairly
stable provider now, and I’m able to receive the medications that I need in order to maintain that
stability. I still experience issues from time to time. For instance, when insurance companies decide that
they no longer want to cover a medication that I’ve been taking for years, and it’s time to maybe try
something new, or I have to wait to receive medication that I’ve been taking, again for years, for a prior
authorization from a doctor. These are just a few of the issues that I face.
I also am from a college town, so the hospital that I go to is a teaching hospital, which means
that I only have the same psychiatrist for about a year before I get a new one. And each time you get a
new psychiatrist, you have to go through your entire mental health history over again. And I often spend
the first two to three months convincing them that, “Yes, the current plan that I’m on, the current
treatment plan that we have in place is successful and I don’t want to change anything.” But again, other
than that stability, I feel like I’m very fortunate compared to other people that I know.
The cycle, honestly is exhausting, and sometimes it does leave me considering whether or not I
can simply manage my symptoms on my own. But of course, I know that is not an option. I personally
have symptoms that are fairly easily managed, but that isn’t the case for everybody.
Now, I mentioned earlier how important 12 Step programs are to me, because I believe it is
paramount to include people with lived experience in the discussion on how to improve our mental
health system. The need for inpatient mental health care is necessary, but the therapeutic value of
realistic follow-up care is what truly helps people like me adapt to real life.
And that, of course, then brings up the issue of who has access to which resources. So for
instance, 12 Step meetings, 12 Step programs are beneficial because they’re free, anonymous, and
available worldwide, with the operative word being free. Poverty is one of the strongest social
determinants of mental health. So typically, if you’re poor, you’re more likely to experience a mental
illness. Also, if you’re poor, you’re less likely to be able to afford mental healthcare, so this creates a
cycle of widespread untreated mental illness for communities that have no other choice but to live with
it.
And I’m sure, as many of you know, sometimes a mental illness is just not something that you
can live with. It can become unbearable. It can result in very low lows, and it can lead to feelings of
despair and hopelessness and feelings that there are no other options.
So this is a very unfortunate system that we have in our hands right now. It’s safe to assume that
everybody in this room agrees that mental healthcare reform is absolutely necessary, but I think it’s time
that we start including mental healthcare as just healthcare, not separating it. It’s important to focus on
it 100%, but it needs to be included in lists of resources. There are plenty of insurance companies that
will cover a handful of appointments with a therapist. For instance, my grandmother has an insurance
company that covers 20 appointments with a therapist, 20. For somebody like me, 20 is not enough. I
need more than 20. So having the privilege to stand up here and speak in front of a room full of people
who are professionals in the field and have the ability to affect real change is an absolute honor to me.
And my biggest takeaway here is that we continue to listen to those with lived experience. It’s
easy to look at something from the outside and pinpoint problems and assume that we know the
answer, but until you’ve lived it, or until you’ve seen it firsthand, that’s not as easy.
And also, my success is a testament to some, but my story is not typical for everybody like me.
Like I said earlier, I grew up with a single parent, income-based housing. My father himself is an addict. I
grew up with some poor circumstances, but I was successful in life, thankfully. But that’s not typical.
There are plenty of people like me who look like me, who come from backgrounds like me, who don’t
get these opportunities that I was given. But because of my success, I now have the chance to stand up
on platforms like this and speak for them, speak about them, and try to encourage others who don’t
quite understand to make changes for them. And that is all I have.