Just because you can’t see it, doesn’t mean it’s not there.

If you were to meet me today, you would probably get the impression that I’m your average, happy, healthy twenty-year-old. I look totally normal on the outside. I’m an average height and weight. I don’t have any big plaster casts on my limbs or glaring surgical scars marring my skin. I’m not hooked up to any machines. I don’t have any tubes sticking out of me.

You would never know just by looking at me that I have multiple health issues that greatly impact my life. You would never know because they are invisible. They don’t affect the way I look on the outside and I try my hardest not to let them affect the way I behave. But sometimes I just can’t help it. And that’s why I’m writing this article – so people can understand why those who have invisible illnesses act the way they do when they look totally healthy on the outside.

For starters, let’s go over what an invisible illness is. This term refers to any medical issue that cannot be detected by the naked eye. In other words, you wouldn’t be able to tell that someone had an invisible illness just by looking at them. All symptoms of the illness are internal and can only be felt by the person who has them.

There are many different forms of invisible illnesses. For example there are autoimmune diseases, such as rheumatoid arthritis, lupus, Sjogren’s syndrome, Crohn’s disease, and multiple sclerosis. There are thyroid diseases like hypothyroidism or hyperthyroidism, or the autoimmune thyroid conditions of Hashimoto’s or Graves’ diseases. Then there are mental illnesses, like depression, anxiety, OCD, and bipolar disorder. There’s arthritis, cancer, endometriosis, fibromyalgia, diabetes, heart issues, Alzheimer’s, and epilepsy. The list goes on and on.

Now I’m no expert on all of these different illnesses. They all have the common thread of being invisible, yet they are all vastly different. However, I am confident that I can provide an accurate description of what it’s like to live with invisible illnesses.

And that’s because I have three of them myself.

Yep, that’s right – three. I have chronic hypothyroidism resulting from a total thyroidectomy, the autoimmune condition of Sjogren’s syndrome, and anxiety. Each of these conditions affects me in a different way, but they are all very present in my day-to-day life. I’ll only venture to discuss the three illnesses I personally have, as those are the only ones I can fairly and accurately describe.

*Disclaimer: the next few (ok many) paragraphs are about my personal experience with invisible illness. If you don’t wish to read all about me (for some crazy reason), then skip down to the next starred paragraph.

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Anxiety

I was diagnosed with anxiety in the seventh grade. That was eight years ago, when I was just twelve. I became incredibly lethargic and was constantly visiting the school nurse and begging my mom not to make me go to school. My pediatrician ran some blood tests, which all came back normal. So he asked me more about my symptoms and realized that I was having panic attacks.

During a panic attack, your body goes into fight-or-flight mode. It perceives imminent danger, so it does a whole slew of things to prepare you to either fight off the situation, or flee from it. Picture that you are walking through the woods and you spot a bear. Your body is going to enter fight-or-flight mode because it sees that bear and it knows that that bear could kill you. Your brain fires a set of commands to the rest of your body to prepare it for the situation.

First your brain says: “quick heart, pump faster! We’ve got to get more oxygen to those major muscle groups!” Then your brain commands: “stop that whole digestion process, who cares about that right now?!” It might also order: “activate those sweat glands – we’ve got to cool this body down so it doesn’t overheat!”

These are essential responses if there really was a bear in your vicinity that you had to fight off or run away from. However, when your body enters this mode when there is no real danger, say when you’re sitting in a classroom taking notes or standing in line to checkout at the grocery store, things can get pretty hairy.

Your heart starts beating rapidly to pump blood faster in order to get oxygen to the body’s major muscle groups. This causes rapid breathing, which can lead to hyperventilation that makes you feel dizzy or lightheaded. It can also lead to numbness and tingling sensations or muscle tension that can cause chest pain. The deactivation of the digestion process can result in an upset stomach or nausea.

All of these physical symptoms (rapid heartbeat, rapid breathing, lightheadedness, chest pain, nausea, sweating, etc.) can lead to even more anxiety because you don’t know what’s wrong with you. You may think you’re going to pass out, vomit, or even have a heart attack. All you know is that you’re caught up in this crazy spiral that you are just sure will lead to impending doom.

And the truth is, you’re totally safe. You’re sitting in the classroom taking notes or you’re waiting in the checkout line at the grocery store. There is no bear poised to attack you and eat you for dinner. But your body still reacts as if there is. And that’s why it is so hard to explain panic attacks to people who have never had them. They look at you and say that you’re fine. You’re totally safe and you’re totally healthy – why are you freaking out?

Why are you freaking out? That’s what runs through so many people’s minds when they see others having panic attacks or just expressing anxiety in general. And the truth is, I’m freaking out because I am feeling all of these scary physiological sensations. It’s not “all in my head.”

It is so real. Anxiety is so real. Panic attacks are so real.

They just seem “fake” or “all in your head” because they are so hard to describe and understand. Until you get educated on what’s actually happening in your body during a panic attack, it is perfectly understandable that you would feel crazy. But I am not crazy. I just live in a body that is hard-wired with a hypersensitive autonomic nervous system. I am like a touchy fire alarm. Fire alarms are meant to go off only when there is an honest to God, full-fledged fire, but mine goes off when someone simply burns toast. Or something like that.

The good news is that anxiety and panic attacks can be controlled. There are all types of breathing exercises, meditation and relaxation techniques, and medications that can help tremendously. My anxiety has not been a huge issue for me since I learned to control it way back in middle school. However, the times it has flared up the most are when I gained my other two invisible illnesses.

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Hypothyroidism (due to Total Thyroidectomy)

In the summer of 2014 I went to see a new primary care physician. I was eighteen and I had graduated from the land of stickers and lollipops, otherwise known as pediatrics. I was nervous enough about starting at a new doctor, the last thing I needed was for her to palpate my neck and ask “has any doctor ever told you that you have a nodule on your thyroid?” Uh, no doc, no one’s ever told me that before. And you’re freaking me out a little here (see above: I have anxiety).

After an ultrasound of my neck and a biopsy of the nodule, it was recommended that I have my thyroid removed, as there was about a 70% chance the tumor was cancerous. Being told that you need surgery and that you probably have cancer are two things that no one wants to hear, let alone someone with anxiety. So I basically broke down for the month of August. I barely left the house and certainly did not function as a normal person. I can’t tell you much about that month, as I’ve mostly blocked it out of my brain.

Anyway, I had my thyroid removed and I bounced back pretty quickly. It hadn’t been cancer, although the tumor had contained cancer cells that had undergone necrosis (or died). I was satisfied with that; it meant that I could go on with my life as usual.

But I was now living sans a vital bodily organ. The thyroid produces the essential hormone thyroxine, which regulates everything from metabolism, to body temperature, to heart rate, to mood. So when your body’s thyroid levels are off, you feel off.

I started on a thyroid replacement drug immediately, but the tricky part is that there is no perfect formula for how much thyroid hormone a certain body needs. It’s more of a trial-and-error process. “Try 137mg of levothyroxine, oh you’re still hypothyroid. Try 150mg, oh man now you’re hyperthyroid. Gosh darn it” (A horrible and inaccurate imitation of my endocrinologist).

And being hypothyroid or hyperthyroid is far more than just a number on a blood test. Each of these conditions can wreak havoc on your body. Hypothyroidism slows down all of your bodily processes, so you can become lethargic, cold, and more prone to depressed feelings (plus a bunch of other obnoxious possible side effects). On the other hand, hyperthyroidism speeds everything up. You can feel hot or sweat more, feel anxious, nervous, or forgetful, and have difficulty focusing.

I have had the pleasure (just kidding) of experiencing both hypothyroidism and hyperthyroidism. And they both suck. Once again, no one around me can tell when I am hypothyroid or hyperthyroid. They would have no idea unless I told them. So when my friends are inviting me to go out with them and all I want to do is stay in bed under the covers, they don’t understand. They don’t realize that I am hypothyroid and all of my body processes are crawling along at a snail’s pace, resulting in profound fatigue. I look just like my normal self, so they wonder why I’m not acting like my normal self.

And I don’t blame them. Of course they wouldn’t realize that this is going on inside my body. I have to tell them why I am acting weird. But, stupid me, I don’t. Because it’s awkward to talk about and I don’t want them thinking differently of me or pitying me, so I just act “weird” and let them think whatever they want to think.

You can read my post “Cheers To Two Years” with my full thyroidectomy story, written on the second anniversary of my surgery.

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Sjogren’s Syndrome

So I kept on keeping on, and a year later I went to see my primary care again. I had been getting sick a lot and overall not feeling like myself, so we convinced her to run some tests on my immune system, thinking maybe it was underactive. Well, it turns out it was actually overactive, which was weird, so I went to see an immunologist. He ran more tests that showed some weird autoantibodies, so he sent me to a rheumatologist. The rheumatologist ran even more tests and came up with two words for me: Sjogren’s Syndrome. I know, WTF is that, right?

Well it’s pronounced “show-grens” and it was discovered by this sexy beast right here:

Basically, when you are sick with something like the flu, your body fights it off by building up antibodies against it. In the case of autoimmune diseases, your body produces antibodies against itself. So my body is currently producing a ton of autoantibodies against myself. Cool right!? Not so much. My body is working extra hard to make all of these extra antibodies and it is wearing me out. My exhaustion level is at an all time high and I’m only twenty years old.

Sjogren’s can come along with a myriad of other super fun symptoms, like dry eyes, dry mouth, joint pain, skin rashes, and swollen salivary glands. Luckily I am not currently experiencing these (although I did have one wacky bout with a swollen salivary gland in my cheek that was so inflamed I thought I had thrown my jaw out of place). Unfortunately, it is possible that I could develop any and all of these symptoms at any time. So that’s something to look forward to, huh? Then there’s the fact that I am now 44 times more likely than your average Joe to develop lymphoma (but no worries, it only affects around 5% of people who have Sjogren’s).

Receiving the diagnosis of Sjogren’s syndrome naturally made me start to think more about my future. It is an unpredictable disease and, as I mentioned, I could develop other sucky symptoms at any time. This unpredictability once again set off my anxiety. What if I never get back my normal energy level? What if I start having such bad joint pain that I can’t exercise or do yoga anymore? What if I get lymphoma? What if, what if, what if. It’s the worst way for an anxious person to start a sentence.

So I’m working on it. I’m working on all of it. I’m trying to stay in the present moment, and focus only on what’s going on right now. Don’t worry about what symptoms you may or may not develop in the future. Don’t worry if one day you feel on top of the world and the next day you can’t get out of bed. Don’t worry if you have to alter the plan you once made.

I am a planner. It is partially due to my anxious nature, but it also helps soothe my anxiety if I have a plan and I know what’s coming next. I had a plan for college. Freshman year I mapped out every course I would have to take for all four years in order to achieve my goal of graduating with a major in Human Services and Rehabilitation, with a concentration in working with children and adolescents and a minor in Psychology.

During my sophomore year I completed a 200-hour yoga teacher training to become a registered yoga teacher. And with my job at a local daycare, I calculated that I would have enough experience hours before graduation to officially become a certified early education teacher. This way, I would graduate college with a degree that included a major and a minor, and be certified as both a yoga teacher and an early education teacher. All by the age of twenty-two.

And now, I just don’t know if that’s how it will all work out. My diagnosis of Sjogren’s is so new and fresh and I am just starting to learn how to deal with it. I have decided to basically take a medical leave for the rest of this semester, although one very gracious professor has decided to allow me to finish the coursework for his classes remotely. I probably won’t be able to follow my perfect class schedule anymore. And I may not be able to work as much as I had planned, so I may not have all the hours I need to be an early education teacher by the time I graduate. And I’m already a certified yoga teacher, but I won’t be able to teach as much as I wanted to. I just resigned from my post as a yoga teacher at my college because I simply couldn’t keep up.

So all my plans have basically turned to sh*t. But that’s ok. Maybe it means that it was never really the plan for me at all. Yesterday I was in a store that sells products from one of my favorite brands, Curly Girl Designs. I came a across a pillow with this quote on it:

“Sometimes your journey will take you off of your path. It’s all part of the same trip.”

Naturally, I bought the pillow. The quote is perfect for me right now. Plus a little retail therapy never hurt anyone. But seriously, things can never always go as planned. Sometimes you just have to accept that you need to adjust to a new normal. You need to change your plans around to click with your new reality.

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*Enough about myself. Back to my original point – invisible illnesses. They are real. And they are devastating. They can cause all kinds of internal symptoms, like joint pain or stiffness, fatigue, gastrointestinal issues, breathing issues, cognitive issues, etc. etc. No one else can see any of these things, so if they just look at you, they assume that you’re perfectly healthy. It’s not their fault. It’s an easy assumption to make.

If you have an invisible illness, you get to decide what you want to tell people. You can either let them know you have this illness, and explain why it makes you act the way you do (whether that be that you need to spend more time resting, or you can’t walk long distances, or you have to eat a very strict diet) or you can decide that it’s none of their business. They don’t have to know anything. And they can think what they want about you because who really cares what other’s think anyway.

But I feel that it’s important to educate people on the nature of invisible illnesses. It’s so difficult to understand them if you’ve never experienced one. I get that. But hopefully in reading this piece, you’ve gained a little bit of insight into what it feels like to live with a condition that affects you so much but that no else can see or understand. Hopefully next time someone is acting out of the ordinary, you’ll stop and think before judging them. Another inspirational quote for you all:

“Everyone you meet is fighting a battle you know nothing about. Be kind always.”

 This applies to far more than invisible illnesses, and it’s such an important thing to always keep in mind. Most people’s problems are not visible or apparent. They are internal and we keep them hidden away in the deepest, darkest corners of our souls. Today I decided to shed some light on mine.

I have this talent, and it’s both impressive to others and oppressive to myself. I put on a great face. A façade, if you will. No matter how miserable I am inside, I can force a smile and hold a conversation and act genuinely interested. Unless you know me really, really well (i.e. you’re my mom), then I will probably act this way around you. It is both because I want to save face, and also because I don’t want to make others uncomfortable.

However, this brave face I put on causes a lot of problems for me. Doctors don’t think my symptoms are as serious as they are because as soon as I enter the office I automatically paste on a smile and say “well, things aren’t that bad.” My friends don’t realize how much I’m suffering because I try so hard to be my normal self – talkative, funny, sometimes inappropriate and always a little weird Molly.

And so I wrote this piece for all those people who only ever see the face I put on. Yes, I am a generally happy, optimistic, vibrant person. But sometimes, I am just a sad, miserable mess. Lately, more than ever. It’s hard for me to prevent my brave face from slipping on in social situations. My nature is to want to please others and make them happy, so of course I don’t want to spill my problems onto them and make them uncomfortable. So this piece that you just read, and God bless you if you read the whole thing, is an insight into what’s really going on inside me. What really lies in those deep, dark corners of my soul.

My hope is simply that if you’re an innocent bystander, you can now understand a little bit more about invisible illnesses. You can see why people with them often act somewhat “strange” and you can understand why we don’t necessarily advertise them to the world. And if you yourself have an invisible illness, whatever it may be, that you know you are not alone. And you are not crazy. And that things will get better. And that even if you had some grand plan for your life that got totally thrown off, it’s OK. You will readjust.

And hey, maybe in some strange way, it was really a part of the plan all along.

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