A while back I wrote about having Turner Syndrome and lightly touched on the different effects it had on my life. Now I'm about to touch on another one that has been my most recent struggle and one that I'm finding many people outside of just girls with Turner Syndrome actually have: Lymphedema.
The scientific definition of lymphedema is “swelling in an arm or leg caused by a lymphatic system blockage.” What it fails to say is that the swelling isn't water based: no, it's protein-rich lymph fluid. This fluid is the body's waste system for all the germs and toxins, so when it backs up, wasted remains dormant and builds in toxicity. It's not just a squishy leg or some swelling.
I've lived with primary lymphedema from the age of 12. It's been a battle to come to terms with being noticeably different. I was bullied for many years, and I started to hate myself and my body for what was happening. I couldn't be myself anymore and I withdrew. I refused to get proper care, under the assumption that if I just ignored it then it would go away: that just was not the case. I became weak and sick from the lack of care and my leg became worse; my parents put a stop to my negligence and got me the proper treatment.
Now, for me, getting lymphedema felt like end of the world (At 12 anything that makes you different is the end of the world.) It's taken me so many years to realize that it's not the end of the world at all. Yes, things are a little harder for me sometimes (you try having a leg that weighs 20 more pounds than the other), but I'm still able to live my life to its fullest and be highly active. Living in New York, the world of walking, is challenging in the best way and helped me prove that it wouldn't be a barrier.
Many people deal with lymphedema -- be it in the arm or leg, primary, or secondary and I firmly believe there needs to be a greater education among doctors and the world as a whole. There shouldn't be a fight to get a diagnosis or proper care, and insurance shouldn't deny people what they need because of their lack of research. Doctors shouldn't just pass it off as nothing or know nothing more about it than what they saw in their textbooks during med school. With all due respect to the medical system, I urge them to up their game and provide more care, especially for those with lymphedema.
I am a fighter and I am strong, I walk around with my leg wrapped in bandages as the mark of a warrior. My battle will never end, but I will always come out victorious. I can't do it alone; I will raise my voice and use my platform to spread information and urge proper care when signs of lymphedema arise. Nobody should have to suffer or feel less than because of ignorance in this world.
It's just a swollen leg. It's a part of who I am, but it's not my defining factor.
