Cushing's Syndrome

A couple months ago I was diagnosed with Cushing's Syndrome, but what does that even mean? I didn't really know when I got that phone call either.

Basically, Cushing's is caused by hypercortisolism, or too much cortisol. Cortisol is the hormone that your body produces when you're stressed, it's what tells you if you should fight or fly. My body can't suppress it. It thinks I'm constantly in that state of anxiety where everything is too overwhelming and I need to either get out or punch it in the face. But your body doesn't just decide that it's going to start releasing too much of that hormone, it's caused by tumors or dysfunctions either on the pituitary gland or the adrenal gland. Originally they thought mine was on the adrenal, but now they're leaning toward the pituitary. It's attached to your brain and controls a lot of hormones, but no that doesn't mean I have a brain tumor. Mine's currently too small to actually be detected in scans, so they're not actually positive where it is. Eventually I'll have surgery to remove it, but for now it's just chilling, waiting to grow and show itself. Most commonly, Cushing's is diagnosed because it causes an excess of weight gain, a moon shaped face, acne, and this whole other list of fun things.

And then there's me.

I didn't go to the doctor thinking I had a growth in my body. I went because of my blood sugar. When I was 13, I was playing badminton with my brother and my dad in the backyard when all the sudden my ears started ringing and my vision started to blur. In a matter of seconds, my vision went from a tunnel to in and out of blackness. I was dizzy, I felt sick, my insides felt like they were on fire, I just wanted to get inside. Apparently I fell over this low level fence that we had, but I don't remember that at all. Fast forward a couple of months and the same thing happened in Walmart when I was trying to get my ears pierced with some friends. My mom took me to the doctor then and they just told me I had hypoglycemic episodes, I needed to eat more frequently and I'd be fine. So I lived with that for years. I'd have a spell every now and then, I'd get in trouble for not eating enough, I'd move on with it. And then it started getting worse. There was a period where I'd have these spells every week in dance, it happened during a recital where I had like six dances and they didn't want to let me go on stage for the last two, and periodically after that. Last summer was the worst one yet. I was at a music festival and I had eaten breakfast and snacked on the drive there, but after maybe forty minutes of waiting in line, I felt it. It happened so fast. One minute I was asking my boyfriend to retrieve my snacks from my backpack, the next he was having to catch me because I completely blacked out. I don't remember much of it until sitting against a wall my boyfriend took me over to and this super sweet guy giving me his sandwich. That's when my mom decided enough was enough. After a few more months of waiting and trying, I finally got an appointment with an endocrinologist. He thought I was insulin resistant which caused reactive hypoglycemia, but he ordered a bunch of tests to figure out if there was something causing the insulin resistance.

That's how they found my hypercortisolism. I got a call a couple weeks later telling me my ACTH levels were off and my body wasn't suppressing cortisol which they believed showed I had Cushing's. But this isn't normal.

Through the forums I've been scrolling through periodically the past couple months, I've learned how unusual my case is. I'm one of the lucky ones that didn't have to wait years upon years and countless misdiagnoses until I got answers. It was heartbreaking reading story after story of these people that weren't given answers until they were 50 and 60 because it was seen as such a rarity. Most people end up going in for the weight that they're unable to lose or how badly their mental health has gotten, only to find out all along it was something that could have been handled so long ago. I realize how fortunate I am but it also made me feel so... isolated. I don't feel like there's many people who can relate, who are at my level, but at the same time I feel like I can't make a big deal out of my symptoms. I don't have the weight gain that for most people is the worst side effect. I know it might come, but as of now I've done the opposite. I'm 20 years old, I haven't be struggling with this at the level it is now for a long time. 

However, it does really suck. Physically my symptoms include acne, skin that bruises super easy, wounds that take forever to heal, and I'm constantly exhausted. I feel like I could sleep for 3 days straight 80% of the time, but I also don't sleep well at all. That's a problem with the cortisol; it makes you restless and more likely to struggle with insomnia. Mentally is where a lot of my problems are. Cushing's is known to cause feelings of depression and anxiety. I feel really low most of the time, where I go from extremes of wanting to cry at anything to feeling void of any emotion. That feeling of apathy bothers me the most. It's like losing sense of my entire being, like I don't know who I am at all. I find it hard to carry on conversations when it's a bad day like that, because my head feels like it's in a cloud of fog and nothing makes sense. Everything feels pointless. Those days have been more common the past couple months. When it's not like that, I feel anxious and wound up. It'll feel like if I have one more thing added to my plate, then I'm going to shatter. I'll just feel generally not well and want to stay in bed all day, but that's not an option. It's easier when I'm busy to ignore it, but being busy also can make it worse. My body lives in a stressed out state, so adding a little bit of stress on top of that feels like a lot. There's other problems that come with dealing with Cushing's. For me personally it's caused my insulin resistance and hypoglycemia and I most likely have poly-cystic ovarian syndrome. There's lots of bad things, but at the same time, I don't want to complain about it. It could be worse. I have it easy compared to a lot of others, within this disease and outside of it. I don't want to be ungrateful for what I have.

But that's why I'm making this. I felt alone when I read through all of those forums and saw how unusual my case was, even within an already unusual illness. I felt alone being a 20 year old with this problem that seemed to only be found in people twice my age. But I want other people in my position to know they aren't alone either. If you're young, if you don't match the criteria, if you just want answers, you're not alone. No matter the severity of your case, it sucks. Your body is worn out, it's constantly in overdrive. You need a break. It's okay to feel that way. I feel like everything is too much to handle a lot of the time, but it passes. This is something that can be fixed. There's surgeries, there's medicine, there's help. You don't have to be miserable forever. 

I'm going on medication for mine. It suppresses the production of cortisol in my body which will hopefully correct all of the other things that come with my Cushing's. I really hope it does because I'm tired of being tired and sad. I'm just trying to graduate college and find a job and I want to feel normal again. I want to feel like myself. That's all.