Man Passionately Testifies to Help Reform Mental Health

By Hakeem Rahim | Jan. 21, 2016


The Senate Health, Education, Labor and Pensions (HELP) Committee held a hearing on Jan. 20 on Improving the Federal Response to Challenges in Mental Health Care in America. NAMI IOOV presenter Hakeem Rahim testified to the importance of passing mental health reform in the Senate (S 1945) and how it will improve the lives of millions of Americans affected by mental illness.

You can add your voice to Hakeem’s and thousands of other NAMI Advocates.

Watch the hearing and read Hakeem’s inspiring testimony below. Then, take action. Email and tweet your members of Congress. Tell them how important mental health reform is to you.

You have the power to advocate for change in the mental health system in this country. The time to act is now. 

Chairman Alexander, Ranking Member Murray, and Members of the Health, Education, Labor and Pensions Committee:

Senators Cassidy and Murphy, first thank you for breaking the walls of silence around mental illness and taking these steps to improve the lives of millions impacted by mental illness. Let me first share my journey with you.

My journey with mental illness began in 1998 during my freshman year at Harvard University. Three weeks into my first semester, I was struck by my first terrifying panic attack. At the time, I could not find words to describe the deep terror I felt, but I knew something was wrong. My journey continued when I had my first manic episode.

In the spring of 2000, I had a second manic episode. My next two weeks were filled with sleepless nights. I showered less frequently and ate sporadically. I had visions of Jesus, heard cars talking and “spoke” foreign languages. This time my parents rushed me to a psychiatric hospital. I was hospitalized for two weeks in Queens, NY. My attending psychiatrist diagnosed me with bipolar disorder.

The last 18 years of my life have been defined by mental illness. Yet through the mental, emotional and financial support of my family, proper treatment, and persistence, I have been able to recover and achieve sustained wellness. There are millions of Americans who are thriving in the face of mental illness, teachers who rise each morning to face their anxiety and their classroom full of students, veterans with lingering invisible scars of PTSD who still provide for their families, mothers who have learned to manage their depression and tend to their months old

baby. Many are thriving, but many are not. In order to serve everyone living with mental illness, we must take steps to address stigma, access to medication and peer support.

In 2012, I began speaking openly about my struggle with mental illness. To date, I have spoken to thousands of individuals with mental illness, their family members, law enforcement officials, faith based communities, teachers and mental health professionals. Since 2013, I have been the NAMI Queens/Nassau, New York, Let’s Talk Mental Illness presenter. In this role, I have delivered over 300 presentations to more than 20,000 college, high school and middle school students.

After one of my middle school presentations in Far Rockaway, New Year, a petite young African American girl bounced up in front of me, reached for a hug and started to share. She went on to tell me that she was self harming. When I asked if she had told anyone in her school, she said no, her shoulders now hunched, I told her, “that’s okay, thank you for being brave and telling me.” I walked her over to her school counselor, the same school counselor a friend and family member advised her not to go to. Because her school saw the importance of openly addressing

stigma and bringing in my mental health awareness presentation, the young girl’s silence and reticence dissolved and she was able to get help. Awareness and education is central to speaking into the silence and shame that is currently surrounds mental illness. Many parts of this bill will, without a doubt, address key components that the lower barriers many face when seeking treatment.

For many medication is also an integral part of treatment. Medication has and continues to play a role in my daily life. I still take antidepressants and antipsychotics which are central to my recovery and overall wellness. Finding the right combination of meds was at times an emotionally and physically brutal task. Thankfully, by working with my doctors I have found the right combination.

The struggle to find the correct medication is arduous for many; at times finding the right medication can literally be the difference between life and death. Paul, a young man I know, went through 10 different diagnoses, Electroconvulsive Therapy and at least 50 combinations of medications. 20 years after his first manic episode, he is now a mental health advocate. Because he had access to affordable medications, he is now helping others work toward wellness. We must keep medications protected and accessible and affordable to people living with mental illness. Doctors and patients must have a choice in finding the right treatment as the wrong treatment can lead to a vicious cycles of hospital visits or substance abuse or exhausted caregivers and even death.

Medication is an essential choice for many, but medication and treatment alone cannot sustain wellness. Another key component of this bill is peer support. The power of being able to confide in and relate to others going through similar experiences cannot be understated. A peer support group I have interfaced with is the quintessential example of the power of the peer. On an email chain, a member of this particular support group mentioned he had relapsed into depression. Within an hour there were responses to his email. One member offered to pick him up to bring him to the weekly group. The members understood that the loving emotional strength of the group could shatter the weighted chains of depression. I am happy to say this group member recovered and is doing well. Having language and codifying what a peer specialist is and what peer support looks like is essential to standardizing an invaluable component of mental wellness.

Mr. Chairman, Ranking Member Murray and Members of the HELP Committee, I am aware I am testifying as a voice for people living with mental illness. My journey does not represent the full breadth of the experience living with mental illness, however my presence here does give a face to the millions of Americans struggling, striving and thriving with mental health conditions. Recovery from mental illness should be an option for all. This bill is a pronounced step in that direction. I deeply and respectfully urge this Committee to move forward on this strong bipartisan bill millions of people are depending on a transformation in how we address mental illness in America.

Hakeem Rahim, EdM, M.A. graduated from Harvard University and from Teacher’s College, Columbia University, start a consulting firm, and become NAMI Queens/Nassau’s Let’s Talk Mental Illness™ (LTMI) presenter, despite his struggles with bipolar disorder. Hakeem has also testified in front of Congress and featured in USA Today. Find out more about him at hakeemrahim.com

Comments
Lisa
I wish NAMI would send all these posts to the committee responsible for helping get this legislation passed. The posts are heartbreaking and show the double-edged sword people suffering from mental illness are hit with. There is no excuse for this lack of care.
2/4/2016 7:04:13 PM

Peggelee
My daughter has struggled with Bipolar Disorder now for 16 years and it is still not under control. She has been in & out of institutions and jail so many times.
Keep speaking Hakeem you will make a difference. God Bless you!
1/30/2016 9:17:56 AM

LAGENIA bailey
Well done Hakeem!!!
1/29/2016 9:20:48 AM

Annie
Affected my husband and daughter please keep going..
1/28/2016 11:18:10 PM

Jessica
I saw his videos on YouTube, and it really was an inspiration to me.
1/28/2016 9:41:17 PM

Mary Shoemake
I don't know you, but i am thankful for your strength and passion. My son has bi-polar. He was diagnosed 2 1/2 years ago. He is in his second semester freshman. I am so proud of him! A year ago, my gifted child's achidemic future was of little importance to me. His staying alive and in "reality", was at the top of the list. Doctors, counselors, horrible trials and errors in medication, a school administrator, family support, NAMI and his strength and perseverance, are what kept him and his dreams alive. I know how blessed he was and is. I also know that his fight isnt over. Thank you for your work. When he survived cancer at 14 months, heis doctor called him the "poster child for success. He is a poster child for how the right treatment and supports can assist one in becoming successful contributors to our 🌎.
1/28/2016 9:41:09 PM

Mel Edwards
Thank you, Hakeem, for your voice, your work, and your testimony.
1/28/2016 5:56:02 PM

Lisa Kavanaugh
The shame here is that we are STILL separating Mental and Physical illness. If we do not integrate all care we will never improve the care. Mental illness is a neurological, biological and therefore a physical disorder as debilitating as Alzheimer's, for instance, in some cases. We know this to be true, the difference being, what we consider "mental illness" can successfully be treated, whereas Alzheimer's is not as successfully treated. After all this time we do not have a way to successfully diagnose and therefore pinpoint proper treatment for various neurobiological disorders. Family members/loved ones are CRITICAL in the successful treatment of those unable to treat/care for themselves. They must have access and involvement in the care of their family member, as well. We MUST drop the stigma now and include all mental illness as illness, to be treated with the same expert care as all people with any illness would have. Until our diagnostic tools improve, I fear this will remain an invisible illness, shrouded with damaging shame.
1/28/2016 5:04:11 PM

Beth
I was off of work, a job I held for 25 years, on FMLA because of my mental illness. During my FMLA my work let me go. I have been unable to get my short term disability except for a month at a time and the amount is less the amount SS would pay me - and they just sent me a denial letter. My illness is causing my family to possibly lose everything we have worked for. I don't feel that mental health is looked at by disability examiners. I have gone for treatment to the same clinic for 19 years and feel they know me yet an examiner is telling me that I can work? Not to mention the stress and extreme anxiety this has caused me.
1/28/2016 12:11:28 PM

Judith Beckman
You are showing the mighty power of one person who will speak out, standing up for truth. Destroy stigma with truth! You are responsible for improving many lives in present and future generations. May you be richly blessed by this outstanding, productive work!
1/28/2016 12:07:27 PM

Tina
I applaud all those who advocate for the awareness and the reform of Mental Health. I was diagnosed 12 years ago with Bipolar Disorder. I am so Blessed and fortunate to have a Doctor who not only listens to me put who is proactive in my care. I also have excellent medical insurance, which is key. Without these two pivotal factors I might be doing so well in my recovery.
1/28/2016 11:41:49 AM

Sue Morris
I am the Mother & Primary Caregiver for my son who is 39 & has had schizophrenia for 20 yrs. I am only say thank you! What I find terribly upsetting is what I call The mental health CIA! Pa. Is a state that will not allow primary health care teams to disclose or work with caregivers and family members! Right nowy son has not been taking his medicine. He needs help. He has a good Action mental Health team-who doesn't take me into their thoughts or return my calls. My son deterioration has been fast THIS. TIME!! But no return calls and This time I've been concerned for my safety! So please keep helping (& talk to Pa congress as I've been doing-with no success)
Thank you and God bless you,
Susan Morris for Jon Morris
1/28/2016 11:18:52 AM

Kaliko Harris
Very powerful testimony Mr. Rahim!
1/28/2016 9:23:54 AM

Susan Miller
Thank you for sharing and yes we do need the help of Congress to pass a mental health reform! I have two daughters, both now in their early 30's, both fight mental illness and both are not on medication at this time. The overpowering urge to self medicate has led to one daughter to being homeless and addicted to crack. She is almost nothing but bones now. But I still have faith that somehow she'll pull through. The other daughter fights severe depression and also self medicates. They are not alone. That is what is so sad. There needs to be changes made so that people like my daughters can receive the assistance that they so desperately need!
1/28/2016 9:17:04 AM

Craig Schwartz
This presentation seems so nice. It is basic and leaves the reader with the hope that there is real help available or looming out there for people with symptoms of bipolar. It's not to be shamed any more than my hearing loss.
1/28/2016 6:23:35 AM

Keisha
Thank you for speaking openly about mental illness. I believe we need more help and people to advocate for those who need help and are afraid or in denial.
1/28/2016 12:41:38 AM

Harvey
Good article, I can sure relate! In 1988 I went off alcohol and other drugs I'd been using daily for the preceding 15 years, promptly went into a manic episode and was diagnosed bi-polar.

While I agree that the medication, therapy and peer support I got and continue to get were essential and may always be, I don't think enough attention is paid to what are considered "alternative" approaches that can reduce and even stop long-term treatment with psychotropic drugs (along with their inevitable damaging side effects) in some cases.
1/28/2016 12:21:20 AM

Regina E Burton
As both a caregiver and consumer I can assure you that receiving quality, effective, and timely treatment has been a lifetime battle. I have spent almost 40 years merely surviving with severe mental health issues, and the last 10 fiercely advocating for my daughter's needs. In a city where more services are available than others we both still.struggle to achieve recovery. From where I stand, stigma is a constant barrier.My daughter and I are not textbook cases to be catagorized and fitted with a one-size-fits-all treatment. Thank you Mr. Hakeem and NAMI for all your hard work. It keeps hope alive that our recovery is still possible.
1/28/2016 12:09:37 AM

Carol Anne Robinson
We must advance mental health services. I often wonder how many people are secretly suffering. I also wonder how many people have a family member or a friend who suffers from mental illness

As a Licensed Professional and Certified Clnical Mental Health Counselor, I have touched the lives of many who have benefitted and gotten better from the psychotherapy I and other professionals have provided.

We must pass legislation that recognizes the difference we can make among the depressed, anxious, traumatized and all psychologically afflicted individuals. We must pass legislation that expands this care

The nation must also be aware that some fully trained experts are being denied the right to treat veterans and the elderly because of political gridlock and blatant discrimination. As such thousands of our elderly and veterans are being denied mental health services.

Licensed Professional Counselors and Licensed Marriage and Family Therapist are rigorously trained to be competent and clinical mental health Counselors. However the Federal Government-- Mecicare and Tricare will not reimburse these ecperts, who are the academic and professional equals to Licensed Clinical Social Workers.

This is a huge part of how we can expand, serve and heal those suffering from mental illness.
1/27/2016 11:33:45 PM

Karen Cohen
S1945 does not do nearly enough to effect significant change in the treatment of people with severe mental illness. Specifically, it does not incentivize the use of AOT, court-ordered outpatient team treatment for people who refuse treatment. Many of those people wind up homeless, incarcerated, and/or cycling in and out of ERs. It does not relax HIPAA laws to enable, for example, a parent of a young adult to find out if he is hospitalized or has been released from a hospital. It does not require that SAMHSA only fund evidence-based programs or even have psychiatrists on its staff. (Right now there are none.) And it does not address the dangerous shortage of psychiatrists. It needs to include those provisions, which are in HR 2646.
1/27/2016 11:03:47 PM

Deb Johnson
Our 27year old son has many mental health problems. He refuses treatment. He doesn't have health insurance. He's not doing very well...trying to live on his own, but he thinks his job is ending and he just signed a lease for 6 months. He's often making suicidal comments. It's a big mess and we struggle all the time. His illness impacts the whole family.
1/27/2016 8:57:23 PM

Florence Jennings
My family members bi polar, &nhas been 7 psychiatric hospitals in the past 2 years. He was recently arrested & put in an isolation cell in the medical unit, and it took weeks, & many phone calls from me for him to get his needed medications. He still does not get his medication for ptsd. How pitiful is this treatment of a mentally ill man?
1/27/2016 8:19:49 PM

Deborah
Thank you for speaking out!
I lost my son. He took his life. He couldn't get the help and support you speak of. It's such a long story. I just want to validate all that you said about the incredible battle in dealing with a mental illness......especially the stigma.
1/27/2016 8:03:30 PM

Rita Thrasher
Thank you for bringing your message to Boca Raton last week, Hakeem. You were equally effective in speaking with students, staff, and community advocates. Thank you for agreeing to a series in Palm Beach County. You are one of Boca Raton's Promises - a messenger for education and awareness.
1/27/2016 7:29:47 PM

Jeannette Wells
Excellent Hakeem!!!
1/24/2016 5:57:15 PM

Wayne Norman Cochran
The value of public speaking about one's mental illness cannot be underestimated in terms of the speaker's respect for his or her own experience and for helping the audiences understand, as best they can, the impact of mental illnesses. They are not just like any other illness...
1/23/2016 3:40:33 PM

elyn
thanks hakeem.
1/23/2016 1:21:54 AM

Desiree Woodland
So important to break the stigma of mental illness and to hear powerful stories of what the road towards recovery and managing mental illness looks like. Youth will be impacted with mental illness awareness education and earlier recognition and treatment can change their lives!
1/22/2016 11:18:30 AM

Rebekah
I have bipolar disorder and major depression. I am not being treated my a Dr now because my husband lost job. What I do to get help?
1/22/2016 9:44:19 AM

Chris
This testimony is very powerful and I'm happy he gave it. I have bipolar disorder as well and have a similar story; I went through some difficult times, but through grace, was able to overcome. It took years to find the right combination of medications, and it was essential 'growing pains'. Keep up the good work.
1/22/2016 8:26:52 AM

Jacqueline McClenton
I certainly wish there were more resources for incarcerated civilan veterans and their families diagnosed with mental illness. Desperately seeking help.
1/21/2016 5:07:20 PM

Moira McCarthy
Thank you Hakeem for speaking out so eloquently! We do need to take action and press members of Congress to work on passing mental health care reform. And we can do so much in our own communities by speaking out.
1/21/2016 4:00:41 PM