Living with Lymphedema

April 5, 2021

Living with Lymphedema

Living with lymphedema presents unique challenges and limitations that may be difficult to navigate. One of the best things you can do for yourself as a lymphedema patient is to empower yourself with the tools and knowledge to live your best life. Living life with lymphedema or at risk for lymphedema may feel limiting, but it is all about acknowledging that risk and making a decision with your family and medical care team about what your best life with lymphedema looks like. We have compiled our best tips from lymphedema patients, therapists, and their loved ones on what has been effective to help them live their best lymphedema life.

Work with a Certified Lymphedema Therapist

One of the best things you can do for yourself when trying to manage this progressive and often misunderstood disease is to work with a medical professional that specializes in lymphedema. There are doctors, physical and occupational therapists that will treat lymphedema, but you really want to find one that has taken the appropriate courses outside of the standard medical and therapy curriculum to treat lymphedema specifically. There is a certifying body in North America called the Lymphatic Association of North America (LANA) that does issue a standard test for medical professionals that have completed Certified Lymphedema Therapist (CLT) training, therapists that pass this test are certified as CLT-LANA. Therapists that have just completed Certified Lymphedema Therapist training from an accredited program but chose not to take the LANA test are simply known as CLTs. When looking for a lymphedema therapist choosing someone that is a CLT or CLT-LANA is key. You can read more about how to find a CLT on our blog.

Discuss Risk Reduction Tips with Your Therapist

When first diagnosed with lymphedema or told that you might be at risk you may have received a list of activities that increase your risk of the onset of lymphedema or may result in further swelling. Over the years this list and the guidance around it has changed. There are multiple medical professionals and organizations that have opposing viewpoints on which risk reduction practices are really important to follow and which risks do not have enough medical evidence to merit the avoidance behaviors around them. First, it is important to know what the risk factors are (we have them listed in our Lymphedema Guide) but you may also get this information from your therapist or doctor. Second, it is important to discuss with your therapist which of the risk reduction strategies apply to your lifestyle and to your lymphedema. There is not a one size fits all approach to managing lymphedema, because each individual’s lymphatic system is different and so when managing lymphedema, it really does require a personalized approach.

Wear Your Compression Garments

This is one of the biggest pain points we hear from therapists working with lymphedema patients. Not wearing your compression can be one of the worst things you can do to keep your lymphedema from progressing. All the things you do with your therapist for volume reduction, to keep your lymphedema at its current stage; receive Manual Lymph Drainage (MLD) massage, short-stretch bandage wrapping, and using a lymphedema pump machine need to be maintained on a regular basis by wearing compression garments, as prescribed by your therapist during the times they want you to wear them. For some that may mean wearing a compression garment all day, for others that may mean wearing a compression garment during at-risk or high-impact activities, whatever your treatment plan is, it is important to follow it. However, this doesn’t mean that you should be wearing garments that are uncomfortable, hot, itchy, or unsightly. There are so many garment options, work with your therapist to find a garment that works to manage your swelling (or reduce the risk), that you can afford, and that is comfortable. When first getting accustomed to wearing compression, it may take a lot of trial and error until you find a garment that checks all those boxes.

Build a Support Network

Finding a lymphedema community, whether it is online or in-person (although, that usually means via Zoom in the present time) can be super important. If you feel comfortable, speak about your lymphedema with your family and friends so they can offer support. If you’re unsure where to start in your search for a lymphedema community, speaking with your therapist may be a good first step, or using social media to connect with other lymphedema patients. Our resources post has some great nonprofit organizations that have a community aspect.

Take Care of Yourself

Work with your lymphedema therapist to formulate a self-care plan to help you feel your best. Your plan may include weight-loss or weight-maintenance strategies, exercise, specialty diet, massage to be performed by yourself or your partner, using your lymphedema pump, wearing compression garments, and dry brushing. There isn’t a one size fits all solution to lymphedema self-care, so be sure to develop a plan that works for you, and one that you feel comfortable doing.

Learn About Cellulitis

Cellulitis is a bacterial infection that is unfortunately, too common to lymphedema patients. It is important to know the signs of cellulitis because if left untreated, it can rapidly become life-threatening. You can learn all the signs of cellulitis here. If you notice any signs of cellulitis, do not delay in seeking medical help. 

Photography: Bob Carey

Model: Kiku Collins

The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding lymphedema. Never disregard professional medical advice or delay in seeking it because of something you have read on the internet.