When our founder was diagnosed with lymphedema, what most bothered her about the diagnosis wasn’t the medical aspect of managing the disease. She knew that she can put in the work and with proper self-care and therapy, she can keep the condition in a manageable state. What bothered her the most was the outward nature of the disease. It bothered her to have people asking her if she was okay, or what happened to her arm multiple times a day, every day. She was a huge advocate for lymphedema education, but she really needed to feel like she was okay, and not no longer a patient. With a visibly swollen arm, she was still getting that sympathetic treatment that “sick” people get.
It was difficult for Rachel to know that she would always be looked at as someone who is sick and there was little she could do to escape it. This was one of the primary drivers to create LympheDIVAs. She felt like LympheDIVAs allowed her to take ownership of her lymphedema and with arm sleeves that looked like accessories and spoke to her personality and style. She still had people asking her about her garments, but the conversation was completely different, they would speak to the design or color and ask her why she wore an arm sleeve or where they can get one. She was approached with positivity and curiosity, which helped so much with the emotional side of healing.
If you’re struggling with your self-image due to lymphedema here are some tips that may help improve your outlook.
- Don’t compare yourself to others. The one thing we know is that the lymphatic system is very unique. Each person is born with a different amount of lymph nodes. So, when it comes to lymphedema treatment and how lymphedema displays, it is very much unique for each individual. You may see those with lymphedema that have very slim arms, but those arms may still feel very full and those patients may be working extremely hard on a regular basis to keep their arms from flaring up. Or you may see arms that are very swollen and that patient may be working very hard but having a hard time. Don’t compare your swelling, how it presents, when it flares up, and how it’s localized to anyone else, only you and your medical team know what’s right for you.
- Your disease does not define you. Whether you were born with lymphedema, or it presented later in life due to trauma, you are not defined by your disease. You didn’t choose to have lymphedema, just like you didn’t choose your hair color or other genetic characteristics about yourself. You do have a choice in how you manage the disease. Wearing a compression garment that is comfortable and makes you feel good is a great start. Be sure to include lymphedema self-care in your regular routine, whether you wrap your affected limb, use a pump, or get a gentle lymphatic massage by a therapist or your partner, know that you are doing everything in your power to manage this disease and that is all you can do.
- Focus on your strengths. It may be frustrating to have limitations due to lymphedema. But it is important to focus on what you are still able to do and accomplish and be proud of yourself for those accomplishments. Instead of dwelling on things, you cannot do, whether it is physically, emotionally, or mentally; try to focus on what you can do. For example, if you are not able to play tennis the way you used to due to your lymphedema, focus on other sports you can play or try a new sport you haven’t considered before, you may be amazing at it! Start a journaling practice where you focus on your strengths and write about them with gratitude.