Stories of Hope: An Interview with Jordan Smelley
This is part of of a series featuring individuals who share their life experiences with mental health issues. Recently, I asked peer support specialist Jordan Smelley about his journey and his current activities. First, I’ll have Jordan introduce himself, and then you will find our interview.
I am currently 30 years old, and I am a Peer Recovery Support Specialist with Transitional Age Youth Endorsement in Texas. Growing up was very different for me compared to my peers because I gained weight out of nowhere during my childhood, and was developmentally delayed both physically and mentally including impairments with social skills and learning disabilities. I also have ADHD, Major Depressive Disorder, and Generalized Anxiety Disorder. I ended up developing breasts and had 6 pounds of breast tissue removed from my chest after I graduated high school in 2007. By the time I was in college I was wearing custom leg braces with custom orthotic inserts because my ankles roll easily, I have a high arch that causes calluses, and foot drop. In 2017 I had genetic exome testing done because all through out my life specialists would say there is something there but they don’t know what I have that caused my life to be so different from a typical child my age. When the genetic exome testing results came back, I was diagnosed with an extremely rare genetic mutation known as PHIP-Related-Disorder. I am currently one of 59 people diagnosed worldwide with this disorder. This genetic mutation explains all the issues I faced while growing up including the unexplained weight gain, and mental health issues while in college. I hope that by sharing my story that it can reach others with this genetic mutation who may not be diagnosed yet so that they can seek genetic exome testing because this is the only way to diagnose PHIP-Related Disorder.
DS: Tell us about when you first started becoming aware of concerns related to your mental health and how they progressed as you got older.
JS: When I was in 1st grade, I had a hard time sitting still and focusing and difficulty with following directions, and controlling showing my emotions. As I got older, I had hard time making and keeping friends because I was delayed in developing age-appropriate social skills. By the time I was in 5th grade I was suffering from depression, ADHD (attention deficit-hyperactivity disorder), and anxiety. I pretty much suffered from these the rest of my school years including college. Once in college my mental health took a major dive because it was a completely new environment with much less support available than I got in grade school.
DS: How did you handle the change in the amount of help/support you could get in college?
JS: Not well at all. I pretty much gave up on life and didn’t care if I lived or not which led to me constantly dropping classes and being in inpatient treatment for my mental health. This was the cycle that was repeated January 2008 until January of 2013 which was when I learned about intensive outpatient treatment, and I finished my last semester of college while in an intensive outpatient program.
DS: What has your treatment consisted of, and what have you found that has worked well for you?
JS: My treatment has consisted of seeing a psychiatrist for medications, a counselor for therapy as well as social skills training, peer support, guided relaxation, playing piano, listening to music, and case managers. What has worked well for me is medication, seeing my therapist twice a month, and checking in with my behavioral health case worker through my insurance biweekly at the very least. Another thing that has worked well for me is developing a support network so I have more than one person to talk to so that I don’t constantly talk with the same person about my problems. Playing piano is also very therapeutic to me.
DS: How are things going for you now? What challenges are you still facing? What have you learned that has helped you stay positive and healthy?
JS: Things are going very well for me now. I haven’t been in any inpatient or intensive outpatient treatment since March of 2015 because I have found a treatment regimen that meets my needs and I tweak it as needed to make sure it continues to meet my needs. I also graduated from Peer Support Services in March of 2017 and obtained my certification as a Peer Recovery Support Specialist in March of 2019. I am still facing issues with some social environments and the neuro-muscular issues caused by my genetic mutation. What I have learned that has helped me stay positive and healthy is that I am not the only one who has had a very different childhood growing up. That it is okay to speak up and ask for help and to ask for what you need in order to be successful.
DS: You’ve been active in mental health advocacy and social media. Tell us about your involvement in those activities.
JS: I am a moderator for a group on Facebook called Recovery to Practice. This group is for mental health and substance use providers including Peer Support Specialists to network and share resources with each other.
There is also a group on Facebook specifically for those diagnosed with PHIP-Related-Disorder. The name of this group is PHIP Kids (Honorary Name Pending Approval: Chung Syndrome).
There is also a group on Facebook for those who are interested in information about PHIP-Related-Disorder including those who are not diagnosed and/or medical professionals. The name of this group is PHIP Syndrome Information and Sharing. You can learn more about PHIP-Related Disorder here.
DS: What would you like to say to encourage others who are still working on their journey of recovery?
JS: It’s possible to conquer whatever it is that you are facing. While it will be hard at first and there will be times you will fall and/or stumble, just keep putting one foot in front of the other and eventually you will get to where you want to be.
Thanks so much to Jordan for his inspiring story of hope! You can connect with Jordan via Facebook.
Would you like to share your story of hope? I plan to feature more personal accounts like this from time to time on my blog. If you are interested in sharing your story, please notify me via my contact page. Also, please subscribe to my blog and feel free to follow me on X (formerly Twitter) or Instagram, “like” my Facebook page, or connect on LinkedIn. Finally, if you enjoyed this post, please share it with a friend. Thanks!