In the dynamic world of psychology, there exists a realm of dedicated professionals who specialize in providing compassionate care for individuals navigating chronic pain illnesses like POTS and Fibromyalgia. Dr. Laurie Dos Santos, a licensed clinical psychologist, exemplifies this dedication through her specialized approach to working with adolescents and young adults facing complex issues. She possesses a naturally warm and dedicated demeanor that has allowed her to connect with young people in an exceptional way. Her commitment to listening carefully and empathetically establishes a strong foundation for her therapeutic approach, fostering a safe and supportive environment for her clients.
You Look perfectly healthy to me
We discussed an important paper looking at the impact on the quality of life for those with POTS, Postural Orthostatic Tachycardia. It is a type of autonomic nervous system dysfunction characterized by symptomatic dizziness with being upright for prolonged periods, or some with severe levels, even sitting upright can be difficult. It is associated with fatigue, syncope in some, nausea, dyspnea, and elevated heart rate with prolonged standing measure at a HR of >130 in adults and >140 in adolescents and children. The most common symptoms in order of frequency are fatigue, exercise intolerance, headaches, insomnia, nausea, cognitive difficulties that mirror those with ADHD including inattention. It occurs more often in females with a 5:1 ratio. Other symptoms include cold intolerance, constipation, diarrhea, heat intolerance, chronic pain, excessive sweating, noise and light hyper responsiveness, and palpitations. The autonomic nervous system dysfunction most commonly is triggered by more severe infections like COVID, Mono, strep throat, and pneumonia but other viral illnesses can initiate POTS.
What is the lived experience for those with POTS?
General Functioning
Unpredictable Symptoms caused difficulties planning. Not knowing if symptoms will occur while driving has lead many to avoid getting their driver's license or driving if they have one.
One of the parents said," There is not one part of our lives that has not been affected."
Emotional Functioning
Parents reported feelings of hopelessness and helplessness, guilt, and fear in relation to their children's symptoms. "It is mentally and physically exhausting to parent."
"At one point she had 12 doctors and 15 different medications in one day...it's a lot, it's overwhelming."
There was decreased confidence and fear by the children. There is a bidirectional relationship with anxiety. The anxiety intensifies POTS symptoms which makes my anxiety worse which causes a downward spiral.
Social functioning
Most adolescents with POTS report poor peer relationships, bullying, and lack of romantic relationships. "It's very isolating and people don't understand POTS," said one teenager.
Some friends may not believe that POTS is real and that they are faking it. This can lead to many not disclosing their diagnosis.
Physical functioning
Many had difficulty doing activities requiring them to stand upright. Some were former athlete's who stopped participating in their sport and had to adjust future goals of playing sports competitively.
Academic functioning
Many were missing school due their POTS. One explained,"my school work struggles because my brain fog and stuff like that, I straight up stopped doing my homework, because I was like I feel so dumb." Homeschooling ends up being chosed due to the flexible schedules and more controlled environment without the environmental and social stressors.
Invisible Illness
Because they look normal on the outside many are nort believed. One parent poignantly shared,
"On the outside these kids look normal, when you have POTS or other invisible illness, but on the inside, they are struggling to get up every day and people don't take seriously what they are going through. My kids go through more than the average adult does by the time they are 90."
Invalidation
Many medical professionals directly or implicitly message that they don't believe their patients are really ill and that they are in a way malingering.
"If I have a doctor that's not going to believe me, how am I supposed to go into society with my friends who don't have a medical license who haven't been to med school , how are they going to understand and like accept me and help me progress...when this guy doesn't believe me."
This is especially a struggle as many of those with POTS are autistic and have difficulty with interoception, the awareness of their inner signals like hunger and satiety. This makes it harder to trust their body and then salt to the wounds is not being trusted by the medical community, let alone others.
Hope for those struggling
Driven by her dedication to understanding and supporting individuals with these complex conditions, Dr. Dos Santos founded Evolvin Therapy and Consulting, where she offers virtual services to her clients. This innovative approach to therapy reflects her unwavering commitment to breaking down barriers and providing accessible care to those in need. In a recent podcast interview with Dr. Michael Lenz, Dr. Dos Santos shared valuable insights gained from her journey into psychology and her specialized area of focus. Her interest in psychology stemmed from a deep-rooted desire to understand individuals on a deeper level, ultimately leading her to specialize in working with complex patients. Over the years, she has focused on building relationships with her clients and understanding their experiences as individuals, emphasizing the importance of trust and rapport in the therapeutic process.
Challenges- Delayed Diagnosis
One of the most significant challenges Dr. Dos Santos highlighted is the issue of invalidation faced by many of her clients from medical professionals, teachers, and even family members. She emphasized the importance of building trust and rapport with clients and the value of support groups in providing a sense of community and reducing isolation for those with POTS and CFS. Understanding the lengthy diagnosis process for individuals with invisible illnesses, Dr. Dos Santos noted that it can take anywhere from five to ten years for patients to receive a diagnosis, during which time they often face invalidation, contributing to a sense of hopelessness. Her acknowledgment of co-existing conditions such as Ehlers-Danlos syndrome (EDS), mast cell activation syndrome (MCAS), anxiety, depression, and clients on the autism spectrum further showcases her comprehensive approach to addressing the multifaceted needs of her clients. Dr. Dos Santos firmly believes in establishing trust and rapport as the foundation for treatment. Once trust is established, she implements cognitive behavioral therapy (CBT), dialectical behavior therapy (DBT), and acceptance and commitment therapy (ACT) to help her clients with invisible illnesses. Her dedication to understanding and supporting individuals with complex medical and mental health conditions is truly inspiring, providing a beacon of hope for those who may feel invalidated and isolated.
Group Therapy
We delved into the importance of group therapy for individuals coping with chronic illnesses. Dr. Dos Santos emphasized that these groups are open to anyone in the 42 states where they operate, highlighting the flexibility and inclusivity when it comes to seeking psychological support for chronic illnesses. Our discussion also touched upon the challenges related to licensing and reciprocity in the field of psychology across different states. She explained that psychologists are part of a licensure compact involving 42 states. However, there are still several states that are not part of this compact, creating barriers for clients in those states to access specialized care. The pivotal role of group therapy in providing additional support for individuals living with chronic illnesses underscores Dr. Dos Santos' commitment to fostering a community of understanding and compassion. The process of connecting individuals with the right group to ensure a good fit highlights her dedication to tailoring support to meet the unique needs of each participant.
Final Thoughts
Dr. Laurie Dos Santos and others like her stand as beacons of hope and support for individuals navigating the complexities of chronic medical and mental health conditions. Her unwavering dedication, compassionate approach, and innovative initiatives, such as virtual therapy services and inclusive group therapy, reflect her commitment to breaking down barriers and providing accessible care to those in need. By prioritizing trust, rapport, and understanding, Dr. Dos Santos offers a ray of light for those who may feel overlooked and misunderstood, embodying the transformative power of specialized psychological care.
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