It’s no secret that mental health issues are on the rise for children and teenagers, but imagine being a kid with a complex, chronic illness.
In a special two-part series on mental health and mental health awareness, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health issues. The first episode looks at this pervasive problem, and the second episode features a conversation about solutions.
The CARRA Podcast host, Claudette Johnson, explores how doctor’s appointments, treatments, endless tests, and medications are part of daily life for kids with a rare autoimmune diseases. Missing school, sitting out from sports, not having friends who understand the child’s condition can be lonely and mentally challenging – on top of the struggles every kid and teenager faces.
In Mental Health – Part One, Claudette interviews a pediatric psychologist who is focused on helping kids living with pediatric rheumatic diseases. Dr. Alana Goldstein Leever is a team psychologist in the Department of Rheumatology, where she works with children, teens, and young adults with rheumatic diseases. She is also an assistant professor at the Ohio State University.
Why is there so much talk these days about mental health issues in kids and adolescents?
We have we have seen an uptick in mental health issues certainly in the context of the Covid-19 pandemic. Factors such as social isolation, educational disruptions, and rising rates of anxiety and depression have contributed to the heightened focus on mental health in young people.
There is also a culture that often tries to quiet these concerns. I think now we are finally at a place where there is more mental health awareness, where we’re talking about what we didn’t talk about before. Globally and in the U.S., we are seeing that there is increasing recognition of this very significant issue that we have facing young people.
As a pediatric psychologist, you are on the front lines of dealing with these mental health issues. Tell us a little bit about what you do.
I’m a pediatric psychologist at Nationwide Children’s Hospital in Columbus, Ohio. My role is to work with children, adolescents, and young adults who are affected by rheumatic disease.
I specifically work in a rheumatology clinic. I work with patients admitted to the hospital with a rheumatic disease, as well as patients who are affected by an autoimmune illness that affects their nervous system – so a neuroimmune illness. So, I am able to work with patients in the context of their medical care.
When they’re seeing their medical doctor, I’m also able to see them in the context of those visits. I see them independently for therapy services and I also consult when they’re admitted to the hospital to provide support during that very stressful time.
I also provide supervision to psychology trainees who are learning about how rheumatic disease impacts young people. I do research as well, focusing on integrating psychological services into Rheumatology care as well as pain management.
Why do you think pediatric patients with rheumatic diseases are especially vulnerable to mental health struggles?
I think we need to start at a place that it is hard being a kid – just that in and of itself. So, navigating going to school, peer and family relationships just developing your own sense of identity – that in and of itself is very challenging. And then on top of that, we add managing of rheumatic disease, which requires coping with doctor’s visits, medication, ranging from injections to multiple oral medications. We know these medications can cause problematic side effects at times, but also there are limitations that kids can have as a result of a rheumatic disease. All of these reasons make it even more challenging to be a kid or a teenager and to also manage a chronic illness like a rheumatic disease.
Do you find that these mental health struggles are more driven by the disease itself or the disease’s impact on the pediatric patient’s day-to-day life?
I would say there is complexity here. We have kids who are facing significant stress of being diagnosed with an illness, having an exacerbation or a worsening of their illness, or taking these medications that they don’t want to take. That’s difficult from a stress standpoint. Then, we can have the addition of medication side effects. We know medications like steroids can impact mood.
In addition to those factors, we also know that just the fact that we are dealing with a disease that causes pain or causes discomfort in our body can also lead us to feel more down and more irritable.
For a kid with a rare disease, there is not much of a community. How does this loneliness impact patients in our community?
The social impact can be quite significant. There are patients who are feeling very lonely in this, very isolated. This is a very unique experience for a lot of kids, like you said, because this is a rare condition. Also, kids might not want to ask for help for things, so it can be isolating at school where they may need help or some adaptations.
Some kids also might feel that it’s just really hard to keep up with their peers physically, like at recess. It may be that they feel left out because when the kids are playing tag their arthritis is impacting them and it’s not fun having to sit down and take a break during recess. It can be frustrating that they can’t keep up with the other kids.
I see this impact kids in different ways, but I think it’s very fair to say that this loneliness, this isolation that can happen as a result of having a disease, especially a rare disease is significant.
What do you think is the first step that a kid or teenager should take in order to get professional help?
One of the first things that we need to do is acknowledge that there’s a problem.
We can’t address the problem if we don’t know it exists. So, talking to someone that you trust can be helpful in this situation. You can reach out to an adult, a trusted adult – it doesn’t have to be a parent or a caregiver.
Your parents can also contact your primary care doctor. There are also some good resources nationally like “Psychology Today” where you can type in your zip code and your insurance information and get a list of local providers that may be accepting patients. You can also look on your insurance website to find providers who take your insurance.
Looking for a pediatric or child provider, I would say would be very important. It is a little more challenging to find someone who specifically works with kiddos with rheumatic disease. So, I would say it’s a bonus if you can find someone who works with patients who deal with a chronic condition.
For parents, I would just recommend that if your child or teenager voices, that they’re having some difficulty, I would say the first and most important thing is just listening. You know, not trying to fix the problem in that very moment. Just being very present, you know? Making sure and checking in on your understanding of where they’re at. Show them empathy and show them that, you know, normalizing their difficulties and that you get it and that you understand the challenges that they’ve been having. That is an important step to be able to get your child or your teenager to feel more comfortable about being open to fixing the problem and getting some help.
What are some solutions that you’ve seen make a difference in the child’s life?
We have some nice research that supports using behavioral treatments to manage mood and anxiety.
Behavioral treatments can effectively manage mood and anxiety, particularly through a technique called behavioral activation. This approach encourages individuals to engage in activities they enjoy, even when feeling sad or unmotivated.
By maintaining a schedule and participating in daily routines and enjoyable activities, individuals can gradually improve their mood and experience moments of happiness. Even if it doesn’t feel as enjoyable in that moment, it eventually, with practice, as we continue to do these things that we typically do enjoy, we start to cheer up a little bit. Maybe you make plans with a friend and at first, you’re going through the motions, but eventually you find that you have a lot of fun and you kind of forgot about feeling so sad for a little bit.
Over time, practicing behavioral activation can help alleviate symptoms of depression and increase overall well-being.
I wanted to ask if you could get one more message across to our listeners today, what would it be?
I would just say that you know, you’re not alone. I think for me, as a provider who specifically works with young people that are facing rheumatic disease, I think that’s something I often hear is that feeling of being alone. I see many, many patients who are facing these same struggles and I think I have that advantage of understanding how not alone you are.
But I think trying to get your self-support when you need it is such a vital part of managing your disease and not just the physical part. You know, thinking about how your mental health, how your stress level can also impact your disease and vice versa.
And again, in working with CARRA and other folks, we’re hoping really to champion this model of providing psychological services as part of pediatric rheumatology care. We’d like to have more of this kind of care being offered across the U.S. and make it more commonplace for folks to be able to have increased access to mental health services because they’re dealing with a rheumatic disease that really does make them more vulnerable to have some difficulties with mental health.
About Dr. Alana Goldstein Leever
Alana Leever, PsyD, is a pediatric psychologist at Nationwide Children’s Hospital and an assistant professor at the Ohio State University. She is the team psychologist for the Department of Rheumatology, providing clinical services to children, adolescents, and young adults with rheumatic diseases. She also serves as the team psychologist in the Neuroimmunology Clinic for patients facing autoimmune and acquired neuro-inflammatory disorders. Dr. Leever is engaged in clinical research focused on pediatric pain management and serves as a clinical supervisor across the internship and fellowship programs within the Department of Psychology.
About Claudette Johnson
Claudette is a Junior at Montclair High School in Montclair, New Jersey. She was diagnosed with Localized Scleroderma at age nine. She enjoys playing piano, reading and competitive diving. Claudette is also an incredible advocate and innovator. She is the host of The CARRA podcast, and she created an award-winning video called “The Land of Rare Disease.”
About Emily Nguyen
Emily is a Sophomore at New York University studying Film and TV Production. She was diagnosed with Lupus Nephritis at age eight. Since her diagnosis 12 years ago, Emily has been a lupus advocate—raising money, spreading awareness and supporting other patients afflicted by the disease. In her free time, she enjoys creating films, painting, baking and traveling.
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