The following was submitted by Alex Gleditsch:
What has your experience been with lymphedema?
My experience has been a painful one. My feet always hurt. I can’t let anyone know why my feet hurt so they think I’m just weak and if I do say so then there is mockery. I always wear pants (even in the summer) because I don’t want to deal with the stares, the questions or the laughter. Although recently I have started wearing shorts out in public.
I can’t let anyone know why my feet hurt so they think I’m just weak and if I do say so then there is mockery.– Alex Gleditsch
Have you ever met anyone else with lymphedema?
I have never met anyone outside of my aunt, cousin and my sister. So I have always thought lymphedema was a rare condition.
What has your experience been with the health care system/doctors?
The doctors at the hospital when my sons were born had no clue what lymphedema is and said that I didn’t know what I was talking about running test after test costing my hundreds of dollars only to find out that they didn’t know anything and I was right. They have said they would have to do “research” to find look into it more. Doctors in my experience have no clue about our condition.
[Doctors] said that I didn’t know what I was talking about running test after test costing my hundreds of dollars only to find out that they didn’t know anything.– Alex Gleditsch
How does lymphedema affect your close friends/family members/relationships?
The only way it affects my wife and children is my children have it (genetically because I have it genetically) and my wife has to deal with my insecurities which can be a bit much, even though it’s kind of getting better.
I wish people knew the pain. Not just physical but also emotional. I don’t really talk to people about it at all. I don’t like drawing attention to myself.
I wish people knew the pain. Not just physical but also emotional.– Alex Gleditsch
What kind of treatment do you undergo for your condition?
Other than compression leggings a couple times a week there isn’t much I do. I haven’t gone and talked to a doctor because I don’t want to waste time and money on them telling me what I already know. Which is elevate your feet.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
I didn’t really know there was a community to fit into let alone be an active part of it, or even fix problems or praise that would be worth mentioning.
What would you like to see for lymphedema within the next few years?
I would love to see more research for a cure or something to lessen the swelling , something I could do to make it go away.