My Not-So-Invisible Illness

I’ve always referred to my chronic health problems as my “invisible illness”. In a lot of ways it is invisible. In general, I appear to be a normal, healthy 39 year old mother of 4. This is especially true for the rare times that I feel good. However, over the last few years as my illness has progressed, it is becoming more visible. I don’t even feel right calling it invisible anymore.

The first real thing was that I kind of disappeared. I pretty much stopped going out and socializing, except for rare occasions. This isn’t something most people would pay attention to though. Something more obvious is my weight changes. I’ve always been thin, but I was a healthy thin so I didn’t care much. This is different. Now I look unhealthy. I’m too skinny and boney. I look sick and unhealthy. I was even referred to as “frail” once. It was a bit of a shock to hear that because it means I wasn’t hiding it anymore. I was able to keep my weight within a 10 lb range, of 115-125 lbs. In the last year I’ve dropped below 115lbs and have been struggling to get back above it. Just in the last 2 months I got all the way down to 110 lbs. This is too thin! I am 5’6″ and my ideal weight should be 125-130lbs. I’m very unhappy about my weight. I eat as much as I can. Sometimes this isn’t always possible. There are times when I have no appetite and have terrible nausea that lasts for a week or more. Other times my gut is so unhappy that putting any food into my body leaves me with cramping, bloating, diarrhea, and nausea for days. Then there’s the issue of my energy. At times, I am so weak and exhausted that preparing and eating is just too much work for me and its just easier to starve. When I feel good, I eat. I LOVE to eat! I always say I have a love/hate relationship with food. I either gorge myself with whatever I’m can get a hold of or I starve. I consciously try to eat enough to gain weight, but it is not easy. I know, poor me. I can eat nonstop and not get fat. Well its a struggle and I hate it. I wish I could gain a few more pounds. I hate being this skinny. I know people mean well when they compliment being skinny, but I realize that they’ll never understand the struggle.

Something that comes along with the weight loss is the loss of my feminine figure. My boobs often change size depending on my weight. I was a full C cup. At this point I’m a small B. I also lost my hips and butt. My womanly figure is gone and its obvious. My muscle tone is also very poor at this point so my muscular definition is gone and my arms and legs are very thin and weak looking. In addition, my skin is pale and my eye sockets are sunken in. I look like I’m dying. Its disgusting.

My use of mobility aids is a clear indicator that I have something wrong with me. I use a cane most of the time that I am out and about. I also use an ECV (power scooter) for shopping or other long outings like theme parks. I cannot walk or stand for too long so these have greatly helped me along the way.

My hair has become a major issue for me lately. Rather, the lack of hair. Over the years I’ve had some minor hair loss. Mostly only visible to me as I washed or brushed my hair. It still looked pretty full on my head, so no big deal. A little over a hear ago it started falling out big time. It would come out in handfuls and I knew this time was different. I started noticing obvious thinning on the sides of my head. Eventually I couldn’t pull my hair back anymore or you’d see my scalp. Then one day I realized that my ponytail was extremely thin like a pig tail. I was able to take all of my hair, twist it up in the back and secure it with a baby clip. I was confused though because I wasn’t actually balding. My scalp wasn’t very visible except for the sides. I realized its because a lot of my hair would immediately grow back after it fell out, so I had all new baby hair growth. It was just all the long pieces that were mostly missing. I started buying really nice wigs to cover up and I actually had some fun with it. I decided one day that I was holding onto my hair for no reason at that point. I called up my regular salon and made an appointment for the next day to cut it all off. I considered shaving it all, but decided a simple boy cut was good enough. The girls I go to are amazing and they were so kind and supportive. I’ve been going to them for years for color so I have a nice relationship with them. I cried, then got over it. It was actually a really cute cut but I couldn’t see that at the time. I felt like a boy and I wasn’t happy about it. I wore wigs and head wraps for the next 8 months almost every day. About 2 months ago, I decided to take a break from the wigs and try to get used to my short hair. I’m still working on liking my short hair, but I am trying to grow it back.

Other visible signs include my dietary restrictions, bruises from frequent blood draws and infusions, random bruises on my legs, hanging onto Eddie’s arm while walking, and just my overall demeanor. I behave like someone who is weak and in pain. I’m also waiting to start losing my teeth, since keeping them healthy has been a struggle that I’m slowly losing. I’m getting ugly and it hurts. It doesn’t matter how hard I try not to, it just keeps getting worse. I know vanity really doesn’t matter, but how we look plays a big role in how we feel about ourselves. It is part of who we are. To lose that it is to lose oneself, especially as a woman.

I tried for a long time to hide these ugly facts about myself, but it is becoming more and more impossible. Like everything else, I have to accept this part of my life. It was one thing before because it was my own dirty little secret. No one HAD to know. Now they know whether I want them to or not. I’m getting used to it though. It is what it is.


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