You got lymphedema? Now what?
You got lymphedema? Now what?
If you are newly diagnosed with lymphoedema – whether primary or secondary – you surely have many questions and concerns about it now. I am a primary lymphoedema patient of 24 years and based on my experience these are my top 3 tips for you.
1) Become a member of a national patient association.
They work to inform the patients, so they can make better choices when it comes to managing the condition. You stay up to date with new research and initiatives which can benefit you. They can advise you on your rights as a patient and give you direction in the pathway. They represent you and work to change local and national policies to ensure lymphoedema is part of health care budgets. They are your voice when guidelines are written on the proper management of your condition. They create awareness with doctors and nurses, so they are better equipped at recognising the condition. Subsequently they might even provide educational tools for clinicians. They might organise educational events and meetings where you can connect with other patients.
2) Join at least one online patient community such as a Facebook group, patient forum or create a profile on Instagram.
Nobody can understand you like another patient with lymphoedema. Finding and connecting with likeminded patients can give you a great sense of relief. You are not alone. As a community we share information and advice, allow venting and frustrations, lend a shoulder to cry on, cheer the successes no matter if it is about finding a pair of shoes that fit or starting bandaging sessions to reduce the oedema. We all know how life can be with lymphoedema and online communities gives you access to support 24/7.
3) Learn to understand your lymphoedema.
ALL patients are different, and our lymphoedema responds differently. We all have a list of things that works well and things that works against us. This can be what food you eat, the compression garments you wear, what kind of exercise you can do or how much stress you can tolerate. You need to compile your own list. And be prepared to adjust as your needs will change during the seasons, depending on your work and life situation and as time passes. Lymphoedema is never stagnant. Every day is a new day, but the golden treatment always includes; compression, exercise, skin care and manual lymphatic drainage.
by Pernille Henriksen
You can find me on Instagram @the_lympha for more tips and inspiration on how to live your life with lymphedema.