Identity and Lymphedema

The reality of my life with lymphedema has hit me particularly hard lately. I am on summer break – which always brings new challenges in the management of my lymphedema. This past month I have been working for a greenhouse selling their plants at a local Costco. I was so excited to start this job as I love working with plants and it was something new to be involved with. It was a temporary job, running only a month long, so while I knew there would be a lot of standing I shrugged it off and figured I’d be able to handle. Well, I handled, but it reminded me of my limitations that I so often try to forget. I never really considered the fact that I just CANNOT do certain jobs. I’ve generally powered through and worked despite the chronic swelling and pain that comes from having a standing job, but it’s always been something that has caused me excessive stress and carries with that a fog of depression that I’ve so often felt. In conclusion, I have worked hard to avoid standing jobs: until this last month. As you can imagine, after standing long days that I haven’t been used to doing in a while, I was feeling down.


My lymphedema never leaves my mind. If I work, I’m pretty much completely shot for the rest of the day/night. I must go home and elevate/rest my leg. If I go out one night with friends and have a few drinks, that’s usually my gathering for the week as it takes a toll my management. Being “young” when you have lymphedema is a whole other story.


This past month has also brought something else new to my life – the dating scene. I have been lucky to have had some incredibly understanding guys in my life who did everything they could to learn about my condition and accommodate me in anyway I needed. Going back into the dating world and realizing not every guy is going to be like that is just plain hard. There’s always so many questions in the back of my mind, when do I tell them? How much do they have to like me for them not to care? Moreover, what are they going to think when they realize just how much work and carefulness that goes into its everyday management? How do I be open about the way it makes me feel without bringing down the conversation? I know it shouldn’t matter but the fact of it is, is that it does.


I read an article recently in the New York Times, “Seeing Outside the Box of Disability” and it described to a tee what I’ve been conceptualizing in my mind for a while now but have had troubles expressing. Howard Axelrod has a visual impairment in one eye and describes his own struggles in identifying as a disabled person. He comes to the realization that it’s not important what you identify as but who do you identify with? He says, “Asking myself this question helped me recognize changes in my own identity, subtle shifts in my attention and empathy that occurred after my accident. Without quite realizing it, I had begun to identify with anyone whose life threw into question normative assumptions about how daily life works.”


This resonates. I do social justice work because of the empathy I’ve developed through my hardships that have been largely due to my lymphedema. It is a daily reminder for me of all that makes me different and is harder about my daily life than the average individual; and it is also a reminder of all the privilege and blessings I have as well. I can look into another person’s eyes and understand they may feel this way too sometimes.


Link to the article I discussed above: