12 Memes That Describe My Daily Challenges With Lipodystrophy

Today is World Lipodystrophy Day. Lipodystrophy is a rare, progressive, multi-system disease that involves lack of adipose tissue (i.e. subcutaneous fat under the skin). People are often trying to lose fat, so lipodystrophy sounds kind of 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 much more.

There are many different types; each looks different, and some even affect the body differently. Some people with lipodystrophy face more challenges than others.

Fortunately, I am doing 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.

For #WorldLipodystrophyDay2019, I wanted to talk about lipodystrophy in a way that I do on a daily basis — with humor and memes. So in the spirit of creating awareness, here are some of the most basic daily challenges I face living with lipodystrophy:

1. 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.

2. For the first 42 years of my life, I didn’t feel full or satiated — until I started 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 this 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.

3. 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 physically fat (at least not the “fat” you see when you look at me), butI’m not supposed to eat that much. Pretty ridiculous, right?This means salads are supposed to be my best friend and simple carbs are my frenemies.

4. 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 onto 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 can damage our emotions and personal relationships.

5. Despite my voracious appetite, many of my fat cells under my skin are dead, which is why 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 feel like I look a little ridiculous in business meetings and socially. No one ever lets me sit on their lap.

6. I am super sensitive to temperature transitions and extreme temperatures. Fat helps regulate your body’s temperature, and since I don’t have that layer of insulation, it’s hard to get comfortable. On top of that, my metabolic system doesn’t respond “normally,” so I’m often extra hot. This can look weird, but trust me, it feels worse.

7. Because of 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 also experience depression because of our unusual body type, this can be a very big deal that can make us isolate ourselves from friends and family.

8. Sometimes people are a bit over-the-top when looking at my unusual body type out in public. I understand I look different, so 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.

 9. I am always tired. Without fat cells, I don’t have stored energy (since that’s where your body stores energy to use later). This is why I always feel tired and fatigued. 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 not good for my body.

10. 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. Still, they sometimes assume that my body works like “normal” bodies. This can feel like more frustration than its worth, so sometimes I skip my wellness just to avoid the long conversations that lead to no answers.

11. My diagnosis has never devastated me, and now I spend my days advocating in positive ways for lipodystrophy. But, when it comes down to it, 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 minimizing the condition won’t make it go away. I can both embrace my disease and live a full and productive life simultaneously.

12. I still have hope for all of us with lipodystrophy. 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.