Lymphedema is a condition that is considered to be lifelong without a current cure. It can occur anywhere in the body and must be managed to minimize the progression or worsen the symptoms and swelling. Various factors, including surgery, radiation therapy, and cancer, can cause lymphedema. It can also be present at birth or caused by genetic conditions.
Living with lymphedema can be physically and emotionally challenging. It can cause pain and discomfort and make moving around difficult. The daily intensive care needed to manage it may also lead to feelings of frustration, sadness, and low self-esteem. Other burdens are placed on an individual living with lymphedema that must be addressed and discussed.
Cost of Supplies and Therapy
Lymphedema can be financially challenging due to the ongoing costs needed to manage and treat the condition. These costs can include medical expenses for routine doctor’s visits, physical therapy for complete decongestive therapy, and possibly hospital and medication costs due to the high risk for infection. With surgeries also becoming more widely available, this is another high expense that is considered. Surgery centers, specialized surgeons, and lymphedema therapists may not be readily available or easily accessible in many areas. This will also add additional expenses for those who need to travel long distances to receive care, with transportation and accommodation costs.
In lymphedema therapy, some individuals need to see a therapist 2-5 times a week for 3-6 weeks for complete decongestive therapy to manage and reduce the swelling. For ongoing treatment and management, some may benefit from manual lymphatic drainage weekly or monthly to improve lymphatic flow. However, many insurance plans do not cover continuous therapy in this setting, or may only cover a limited number of sessions per year, which can add to the financial burden as the individual may be left having to pay this out of pocket.
Along with medical expenses related to direct care, there are also the high, routine costs of lymphedema supplies, garments, and equipment. Lymphedema equipment, such as compression garments, bandages, and pumps, can also be costly. Like with medical services, these supplies are only sometimes covered by insurance, or coverage is often inadequate for optimal management.
Until 2022, Medicare has not covered essential compression garments to manage lymphedema. Garments are worn daily, and many may need to wear one at night to avoid worsening symptoms and swelling. Daytime garments for chronic lymphedema are typically customized and must be replaced every 4-6 months to remain effective. These garments can add up to cost hundreds to thousands of dollars a year, which may be covered only for specific individuals and insurance.
However, at the end of 2022, the Lymphedema Treatment Act was passed through Congress, which includes financial coverage for these supplies. It is currently set to go into effect in 2024 and will provide financial support for millions of Americans.
Work and Career Limitations
Lymphedema can cause discomfort and make moving around difficult. Sitting or standing for long periods can also worsen lymphedema, especially in the legs and pelvis. An individual may find that specific jobs or tasks worsen symptoms and lead to an increase in pain or other concerns related to lymphedema. Due to this, there is the potential for job loss, inability to work, and lost wages.
If individuals can maintain their current job, burdens may still impact their work and career. There are additional medical appointments to attend, work adaptations that may be needed to utilize medical equipment, and general discomfort that can take away from time at work or lower productivity. This may be a burden due to the risk related to career transitions and progressions, lowering salary and pay potential.
Financial Resources Available
If you or someone you know is struggling with the financial burden of lymphedema, some resources may be able to help with the cost of medical supplies and equipment. Some organizations to look into include:
- The National Lymphedema Network (NLN): The NLN Marilyn Westbrook Garment Program provides assistance with medical supplies
- Brylan’s Feat Foundation: Provides support for pediatric lymphedema
- Connie Cares: Provides compression pumps to qualified patients
- Core Compassion Program: Assists in purchasing a compression sleeve for those who have had breast cancer and treatment
- Ninjas Fighting Lymphedema: Provides financial support for treatment and supplies
Please note that most of these organizations have eligibility requirements and may be unable to assist in all circumstances. It is also beneficial to reach out to a local certified lymphedema therapist to seek other resources in your area to help with the financial costs of lymphedema.
Lymphedema management and self-cares can take up a lot of time but can vary depending on the severity of the condition and the support or physical abilities. Some may need to spend 10-15 minutes a day to get compression garments on and off, while others may need to take multiple hours a day, both in the morning and evening, to do cares like manual lymphatic drainage, using a compression pump, skin cares, and bandaging.
Manual lymphatic drainage may occur at a clinic and done by a therapist, which adds time for transportation to and from the facility. It may also be done at home with or without the assistance of a caregiver or partner. Another option that is less taxing on the body but still needs time to complete is a pneumatic compression device or pump. Most individuals spend 30-60 minutes daily with either of these treatment options.
Compression bandaging may also be done during complete decongestive therapy and for a reduction in swelling of a limb. It may also be done to maintain lymphedema, typically at night. Bandaging may be done with the assistance of another person or it may be done to oneself. Still, in both situations, it can take someone from 10 to 45 minutes, depending on the severity and number of limbs needing management.
Bandages and compression garments also need to be washed daily to maintain their stretch and effectiveness, maintain good hygiene and lower the risk of infections. Garments and bandages often need many hours to fully dry before they can be used again. Not only does this take a lot of time, but due to the frequency of these supplies, many will need to purchase a second or third set to allow for consistent compression support, adding a further financial burden.
Self-Esteem, Isolation, Body Image
Lymphedema can significantly impact an individual’s self-esteem and cause feelings of isolation. The swelling and increase in an area of the body can make finding clothes that fit well challenging and lead to decreased body image. Some may feel embarrassed or ashamed of how lymphedema makes them look and feel, which can lower confidence and a sense of self-worth.
The physical limitations of lymphedema may include the inability to participate in activities, public outings, or pursue hobbies and interests. Traveling may also be cumbersome and lead to worsening symptoms. These limitations may lead to an individual skipping out on or being unable to participate and cause social isolation. As we just spoke about, the amount of time lymphedema may take to manage each day can also take time away that could be spent with loved ones and friends. This can also lead to feeling isolated and also lead to other negative emotions.
Emotional Feelings and Quality of Life
Lymphedema has a significant negative impact on daily living, anxiety, depression, and overall quality of life (Lam, 2006). With the high costs leading to financial burden and up to 2-3 hours a day needed to manage the condition, feelings of frustration, anger, sadness, and others are more likely to occur. The level of self-care required every day can become exhausting.
The inability to move around, be physically active, or travel without considering and planning for lymphedema care may be taxing on a person. Due to there being no current cure for lymphedema, it is regarded as a chronic condition, which may take away one’s hope for improvement or a day that these burdens are lifted.
Lymphedema fluctuates for many, including unexpected infections, skin and tissue changes, and the need for more medical support. Quality of life has been shown to decrease at a limb volume change of just 5-10% (Cormier, 2009). Someone can be incredibly diligent with self-care and management, and a flare-up may occur without reason. This can lead to feelings of being defeated and frustrated. If someone takes a short break from treatment or management for physical, mental, or emotional reasons, this may also lead to a flare-up of symptoms, which then can cycle back into feelings of guilt and shame.
It is vital for individuals with lymphedema to seek out support from loved ones and healthcare professionals to help manage the physical and emotional impact of the condition. Social workers or other resources may also be necessary to assist with the financial and work-related burdens that come with managing the condition. It may also be helpful to connect with others living with lymphedema to share experiences and find a community for support.
If you or someone you know is struggling with mental health due to living with lymphedema, it is important to seek help. Please speak with your healthcare provider or a mental health professional, as they can help provide support to manage your mental health and assist in developing individualized coping strategies. Remember that it is okay to ask for help and to seek treatment. It is crucial in managing your lymphedema, mental health, and overall well-being.
Armer, J, The Problem of Post‐Breast Cancer Lymphedema: Impact and Measurement Issues Cancer Investigation 1:76‐83, 2005
Lam, R., Wallace, A., Burbidge, B., Franks, P.J., & Moffatt, C.J. (2006). Experiences of patients with lymphoedema.
Cormier, S et al.(2009) Minimal limb volume change has a significant impact on breast cancer survivors. Lymphology 42, 161‐175