For #WorldLipodystrophyDay2019, I wanted to talk about lipodystrophy in a way that I do on a daily basis….with humor and there’s no better way to do it these days than with memes!
But before I get started…here’s a little of the boring background. Lipodystrophy is a rare, progressive, multi-system disease that involves lack of adipose tissue (aka subcutaneous fat aka fat under the skin). People are often trying to lose fat, so lipodystrophy sounds kind cool, right? Actually, not so much. In fact, it turns out that fat does a lot of good things to keep our body going. Fat gives us energy, creates hormones our body needs to function right, helps regulate temperature and so, so much more. The other thing about lipodystrophy you should know is there are many different types, and each look different and some affect the body differently. Some people with lipodystrophy face more challenges than other people. Fortunately, I do pretty well right now. I can’t really say where I am in the progression of the disease, as it is not predictable. For the most part, I’m managing my health just fine. That said, I do face problems that are important for my friends and family to know about. So, in the spirit of creating awareness, here are some of the most basic daily challenges I face living with lipodystrophy:
- I’m always hungry. Let me say that more clearly, before leptin treatment I was ALWAYS hungry. I’m still pretty darn food focused so I wouldn’t recommend standing in between me and a table of food, but there are many times in a day where I don’t need to eat like I did before treatment.
- I didn’t feel full the first 42 years of my life, until starting leptin therapy. For me, being full meant food all the way to my esophagus! Leptin is made by your adipose tissue. Remember that fat under the skin I told you about? You can do the math: low or no adipose tissue = very low leptin. One of the big problems with that is that leptin is a hormone that tells your body when you have had enough food or when you don’t have any food in your system. Leptin does other important things too, but food comes first in my world. Unfortunately, most people with partial lipodystrophy do not have access to leptin.
- I am supposed to eat a perfect diet, even on treatment. In fact, I’m directed by my doctors to eat fewer calories than most people. Think about THAT cruel joke: I’m always hungry, I literally CAN’T get fat (at least not the fat you see when you look at me), BUT I’m not supposed to eat that much. Pretty ridiculous, right? That means salads are supposed to be my best friend and simple carbs are my frenemies.
- Enough about food? Not yet. I was HANGRY before it was cool. It may be a funny commercial now, but honestly, no one is laughing when a person with lipodystrophy is hangry. My dad used to refer to me as the Tasmanian Devil because I was truly a storm system when I was that hungry. We can move very quickly from ”all the time-hungry” to “hanging on to my sanity by the hair on my chinny chin chin – hangry” (And don’t get me started on chin hairs). Seriously, that kind of hunger severely impedes on our ability to get through the day and damages our emotions and our personal relationships.
- Despite my veracious appetite, many of my fat cells under my skin are dead so I look really thin. Sounds cool, right? Not so much. Without fat cells in the right places, my fat hangs out in all of the wrong places like my organs and my blood. I will admit, not having cellulite on my butt is superficially nice, but not so comfortable. For some people with lipodystrophy, this adds to the severe muscle and skeletal pain experienced without any pain treatment. For me, the lack of fat makes it hard to sit down with good posture for more than a few minutes. I look a little ridiculous in business meetings and socially. No one ever lets me sit on their lap.
- Fat helps regulate your bodies’ temperature. I don’t have that layer of insulation, so I am super sensitive to temperature transitions and to extreme temperatures. On top of that, my metabolic system doesn’t respond “normally” so I’m often extra hot. This can look weird. Trust me, it feels worse.
- Also, with abnormal fat distribution, I can’t find clothing that fits. Again, that may seem like a typical problem, but when we already look so different and sometimes suffer from depression because of our unusual body type, this can be a very big deal that can isolate people from friends and family.
- And while I understand I look different, sometimes people are a bit over-the-top when looking at my unusual body type out in public. I often use it as an opportunity to educate, particularly when people ask me. But come on, getting CONSTANT stares does get a bit taxing. Think I’m being a bit paranoid? Hang out with me for a few hours. It’s mostly entertaining.
- Without fat cells, I don’t have stored energy (cuz that’s where your body stores energy to use later) so I am always tired. I mean, ALWAYS. There’s not a day I’m going to suddenly have tons of energy, so I just get through life feeling like I’m underwater much of the time. I fake it very well…or I run on adrenaline, which also is no bueno.
- Since lipodystrophy is rare, I know more about how my body functions than most doctors. It’s not that they aren’t smart, obviously they are, but they sometimes assume that my body works like “normal” bodies. This can feel like more frustration than its worth…so sometimes I skip my wellnes just to avoid the long conversations that lead to no answers.
- My diagnosis has never devastated me and now spend my days advocating in positive ways for lipodystrophy. But, I do have a progressive and incurable disease. I don’t want to be negative, but I do want to be realistic. I know it’s hard to know what to say to someone with a chronic condition but minimalizing the condition won’t make it go away. I can both embrace my disease and live a full and productive life simultaneously.
- Despite these challenges, and oh so many more serious ones that don’t make good memes, I am happy to celebrate #WorldLipodystrophyDay2019 today and every day because as much as this disease has taken from me, it has given me an entire lipodystrophy family around the world.