Flying with Lipedema & Lymphedema

The last time I flew was maybe 2001. My husband and I flew to Florida to attend his uncle's wedding, and to visit with my father and step-mother in Georgia.

Nothing stuck out during the travel for this trip that would keep me from wanting to fly again, I even remember a small child on the plane going "weeeeee" as we took off and thought to myself, heck yeah, weeeeeee, what fun indeed!

Flash forward almost 20 years, and I have an opportunity that requires I fly. A wonderful opportunity, that includes my travel expenses being paid for, so how can I turn this down? Answer, I can't.

My family and I will be traveling to New Orleans in a week (in fact I'll be in the air this time next week), for the 2019 Power Symposium Wellness, Education, and Renewal conference, where I will be presenting as part of a Juzo panel of advocates. We will be sharing our individual stories on how we live with our conditions, and how we fight to keep on moving and living our best lives.

Juzo is a manufacturer of compression, and they reached out to me over the summer, wanting to do more for Lipedema advocacy groups, especially ones like mine, where fitness and moving are key. Their motto is freedom in motion, I really like that, especially since I could not do what I do fitness wise, without my compression, and surprising to them, I have been wearing their compression since being diagnosed.

There are physical concerns that come up with flying for someone with Lipedema and Lymphedema, but that will be addressed later. For me the biggest initial concern was an emotional one, and it is one that is still hard to write about today. Will I fit? Will I be humiliated? Will I be subjected to hatred?

So what was my first step in this scary new flying adventure? I did what I always do with new adventures, research.

For me, having an understanding of what to expect goes a long way, even if it doesn't quite happen the way my research might indicate it will, I feel less stress with some education about what typically happens.

I did a quick google search about flying at my size, and I found there are FaceBook groups that are just for this exact need, the one I used is called Flying While Fat. It is a closed group on FaceBook, with almost 9,000 amazing, experienced, members. I joined and posted a question about my specific trip and my concerns, and I got amazing feedback! I also found a wonderful website called Seat Guru, that has seating maps for all the planes, with great customer feedback about what seats to choose, and even photos of their last flight in said seat.

Bottom line: for my trip, Southwest was going to be the best airline. They have the best Customer of Size policy, and they will reimburse you quickly if you opt to purchase a second seat. I chose to purchase the second seat, there is no guarantee one will be available, although a lot of folks on the flying while fat group indicated they choose to not pre-purchase the second seat, and as long as it is not a sold out flight, they are given a second seat when they mention the COS policy upon check in. For me, having the reassurance that I had paid for the extra seat went a long way in my emotional comfort. One less thing out of my control.

People of size are not made to feel welcome in many public places, and airplanes are no exception. Did you know the average seat on an airplane has not only gotten narrower, but the leg room (or pitch) has also been reduced over the years. The seat width has gone from about 19-20" down to 15.5-17", and the pitch has gone from about 32-36" down to 29-32". The pitch is measured from one point on a seat to the same point on the seat in front of it, and doesn't take into it's calculations, the thickness of the seat in front, which will take away from your actual legroom.

Lipedema makes fitting into these airline seats even harder, as we tend to carry a lot of our mass in our hips, and our bums. So getting a second seat is mandatory at my stage.

The other advice I was given from the Flying While Fat and Lipedema Fitness groups:

1. Show up at least 2 hours before your flight, 2.5 hrs. if you need a wheelchair. Some said they do not use a wheelchair typically, but the long lines and limited seating (airport chairs tend to have arms that don't move) make getting the wheelchair in the airport a necessity for some. 
2. Use curbside check in if possible, it is a lot faster.
3. Expect to be patted down. The Lipedema fat shows up differently on the ex-ray machines at the airport, and even the metal detectors seem to flag people of size (for warm areas) they will pat you down.
4. Mention at check-in that you are utilizing their COS policy, and they will let you (and a guest) pre-board before the other fliers, which comes in handy to find a seat you want (as they are not assigned on Southwest). From what I have found out online, all but the front row on Southwest flights have arms that can be raised up. A second seat makes no sense if the arms don't raise up.
5. I also found out that there are front and rear restrooms on Southwest flights, but most likely I will not be able to fit in them, so I need to plan accordingly. Which can be pretty tricky given they recommend drinking lots of water and wearing all the compression I have - luckily each leg of the flight is only 2.5hrs.
6. Some choose to purchase their own seat belt extenders online, but the airline does have them, and all said Southwest reps are pretty discreet about handing them out, they also are not liable (insurance wise) if you use your own extender.

My research did a lot to help me figure out how to fit, but the being humiliated and experiencing hatred are yet to be seen, but it is no different than what we experience every day. We never know the situations we will find ourselves in, or the folks we will meet, but letting the fear of those unknown parts of life govern what we do, where we go, and how we live our lives only gets better when we try new things, experience the wonderful things our lives have to offer. Take back the power you give to total strangers, they might just surprise you, and realizing you don't really care what they think opens you up to so much more this world has to offer.

I will keep you posted how I make out. I am hoping I can record some videos or at least grab some photos along the way to help explain my experience flying with Lipedema and Lymphedema. As well as of the conference. I feel so blessed that I get to have this experience and be in front of the manufacturer and vendors of compression and other treatment options, so they can learn more about what it is like to live with these conditions and hopefully make their products even better! 

#WhatMovesYou #JuzoCompression #POWER2019