Living with Hereditary Lymphedema: Jordyn’s Story

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Guest post: What It’s like Living with Hereditary Lymphedema by Jordyn. You can find Jordyn’s previous guest post on Erythromelalgia here.

Hello again! My name is Jordyn and I’m chronically ill. I actually have many different chronic illnesses, but I thought that today we would talk about one of the rarer ones. I am living with hereditary lymphedema, which is a form of lymphedema that is genetic. No one else in my immediate or extended family has lymphedema. My geneticist thinks that some of my genes mutated in order for me to develop this condition. Lymphedema is one of the very first conditions I developed 8 years ago at the beginning of my chronic illness journey. However, it has been the last condition to be diagnosed, with me only seeing a specialist for it last year.

The Science Behind Lymphedema

What is lymphedema? You may not have heard of this condition before so I want to tell you a little bit about what lymphedema is. Lymphedema is a form of swelling that usually occurs in one limb, such as your arm. The reason that this swelling happens is because the lymphatic system has been disrupted. The lymphatic system is how your body moves waste products out of your cells and into your bladder. It also carries around your immune system, bringing immune cells to where they are needed to fight infection.

In the United States, lymphedema is most commonly caused by breast cancer surgery. A small part of the lymphatic system is removed, such as a lymph node, because usually, the cancer has spread to affect it. This causes a break in the system, making it harder for the fluid to be transported around your body. The fluid backflows into the limb and lymphedema is formed. Now that you know more of the science behind my condition, I want to tell you how it affects me on an everyday basis.

What It’s like Living with Hereditary Lymphedema

My lymphedema causes me a lot of pain and swelling. Those are the worse symptoms. I can feel the fluid trying to push through my body, but it has a very hard time doing so. This is very painful since I can actually feel where the blockages are. Lymphedema prevents me from doing many things in my daily life. It is one of the reasons that I am homebound, because of the pain and the difficulty in moving caused by the swelling. The same goes for having fun with friends and family. It is hard for me to even get comfortable sitting on my couch, so going out to an activity is impossible for me.

One of the most frustrating things about lymphedema is the trouble with clothing. Since fluid is constantly moving, therefore constantly blocking, I swell more and more throughout the day. This means that I move up several clothing sizes from what I originally started at. I have to keep around 3 different wardrobes to accommodate the swelling. This is so hard on me physically and mentally. The cute clothing and even pjs that I want to wear all the time are off limits when I’m swollen. I feel restricted and burdened by a body that I cannot control.

Most of my family does not believe that I deal with lymphedema. It does not help that I have the condition affect my body from head to toe. This makes the swelling look like body fat. That is the big reason why it took so long to get a diagnosis. Doctors would just say to lose weight. Which was very frustrating, to say the least. However, I am so grateful to have had my mom right there by my side through the entire journey. She is my caretaker and helps me out with many different things, including dealing with my lymphedema.

Insecurities and Lymphedema

For the longest time, I felt insecure about the way I looked. I had begun to believe that I was fat like the doctors said. It took many years to just accept myself, let alone love myself for who I am. Having a condition that affects the physical condition of your body is beyond difficult to comprehend unless you have gone through it yourself. Yet, slowly, step by step, I moved towards my mental and physical healing. I am in the middle of going through the beginning stages of lymphedema treatment. It is one that I will have to be on for the rest of my life. It is completely worth it though.

If you are going through something similar today, I want to give you some words of encouragement. You can do this! Some days are going to seem impossible and they are if you look at the whole pie. Instead, take your piece and eat it, one small bite at a time. That is a visual reminder my mom gave me years ago that I still use to this day. Fellow warrior, I believe in you. It’s time for you to believe in yourself too.

Where to Find Jordyn Online

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One Reply to “Living with Hereditary Lymphedema: Jordyn’s Story”

  1. Thank you Jordyn for explaining Lymphoma so clearly, I now understand it a lot more 🙂 💚

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