“Beyond the Swelling” by Leone Greer Jr., 19
My journey began in 2018 at 12 years old. I was diagnosed with primary lymphedema, this came with many challenges, physical and emotional. And now, as an 18-year-old male navigating life as a college freshman with this condition, I have come to realize that the rare disease community is constantly faced with challenges, that often go unseen by family, friends, and even the medical community. The lack of emotional and mental health support is one of the most overlooked challenges, in my opinion, for individuals living with rare diseases. Lymphedema comes with a lot of physical symptoms and much of the focus is placed there, but the mental toll of this disease on those that live with it, does not get the attention it needs.
Lymphedema is a chronic disease characterized by the swelling typically in the limbs due to a buildup of lymph fluid causing a block in the lymphatic system. My personal journey has been dealing with chronic swelling in my left foot, ankle, and both legs. Living with a rare disease causes a lot of physical impairments and that alone is hard to deal with, but people don’t understand the effects of it on your mental health. The discomfort, constant physical therapy, bedtime wrapping, constant daily need to wear compression garments, and continuous lymphatic draining exercises daily is only one aspect of the disease; it is more about the emotional strain of managing so many things and praying it doesn’t worsen or become more noticeable feels very isolating.
When I was first diagnosed, I didn’t understand what was happening, I didn’t know what to expect I went through a lot of doctor visits with specialists and diagnostic testing. I didn’t know anyone that had lymphedema. I didn’t know what to ask, how to talk about it, or express my feelings of anxiety, uncertainty, and frustration. The emotional impact was different from the physical symptoms, they were easy to explain, swollen legs and feet, continuous discomfort, but the emotional part was hard to articulate feeling and knowing that you are different from your friends and peers these feelings were hard to express. I felt like an outsider, struggled with body image, refused to wear shorts because I was constantly being asked about the compression garments and I always felt judged.
The emotional and mental burden is not unique or limited to me; it is a common experience individual living with a rare disease experience. Doctors, therapists, and specialist focus on the physical aspects of the disease to manage symptoms. Although, this is great that is their job and their focus, the psychological and emotional impact takes a toll. The physical symptoms and characteristics are a constant reminder that you are different and often leads to depression, frustration, and loneliness.
The emotional and mental burden is not unique or limited to me; it is a common experience individual living with a rare disease experience. Doctors, therapists, and specialist focus on the physical aspects of the disease to manage symptoms. Although, this is great that is their job and their focus, the psychological and emotional impact takes a toll. The physical symptoms and characteristics are a constant reminder that you are different and often leads to depression, frustration, and loneliness.
Most people in the rare disease community experience the same feelings of loneliness and isolation. Feeling isolated can lead to hopelessness and despair these feelings can become overwhelming without proper mental health support. You feel like you’re the only person going through it, because it is a rare disease it is hard finding others with the same diagnosis.
Through my own experiences and observations over the last 6.5 years I have learned that prioritizing your mental health when dealing with a rare disease is essential and just as important as your physical health. Professionals should start to integrate mental health resources and support into the treatment plan and make sure they understand the unique challenges that come with living with a rare disease. The treatment plan should include counseling and support groups from mental health professionals specifically trained to support people with rare diseases.
I can think of several ways the rare disease community can start to address mental health challenges that people in this community face. First, understanding the psychological impact a rare disease diagnosis can have on a person especially a young child or teenager is primary. There needs to be more awareness and understanding in healthcare. Training is essential to healthcare providers so they can recognize and acknowledge the emotional and psychological struggles that accompany chronic conditions. Lymphedema, as other rare diseases, do not just affect the body the impact on the mind can be worse, trying to accept the diagnosis and the physical changes to your body. Healthcare providers should be able to make referrals to mental health professionals that are trained to address the mental health struggles and challenges associated with living with a rare disease.
Additionally, support groups are essential and crucial. It is important for people living with rare diseases to find a community of others that understand their struggles and experiences this can be very therapeutic. Support groups can provide emotional support by allowing individuals to share their experiences, struggles, and victories. These groups can be in social media groups, in person, virtual, and online forums, the thing that matters most is having a safe space. Online groups offer the most flexibility and will allow individuals to connect with people all over the world and build connections.
Furthermore, another important aspect to address is the mental health of family members and caregivers. Caring for someone and supporting someone with a rare disease can take a toll on caregivers as well and can lead to them feeling isolated. Counseling and support for them is essential because they play a huge role in supporting individuals with rare diseases. Family members are usually the first line of support, and this is new to them also, so providing them with the tools to provide emotional support and cope with the challenges following a diagnosis is crucial.
Raising awareness about rare diseases is essential, when you bring awareness and open the conversation it allows people to have a better understanding of a disease and helps them be more empathetic. Media coverage and public discussions helps reduce the stigma associated with rare diseases and can allow people to seek help. A lot of people with rare diseases feel ashamed because it is rare, and no one is talking about. I had to see a doctor at my college before traveling overseas, he was amazed he has never seen a young man my age with primary lymphedema, he was intrigued and it made me feel a little uncomfortable. If mental health is a more visible topic people will feel more comfortable talking about it, answering questions, and educating others not just on the physical aspects but the emotional aspects too.
Living with Lymphedema has taught me to be resilient by focusing on my mental health and taking better care of myself. The physical aspects are challenging, but the psychological parts of it have been the hardest to deal with. My mother has been my emotional crutch from the beginning, but I am sure this has been daunting for her and I believe that mental health support for myself and her would have gone a long way over the years. It is time to recognize that mental health support is critical in living life with a rare chronic disease, and it needs to be implemented in the treatment plans. No one should have to deal with the emotional effects of living with a rare chronic disease alone.