I Wish You Could See Me - Living with invisible illness

What is wrong with you?

To look at me you would never think there is anything wrong with me, besides some extra pounds. Even at my annual exam I checked out pretty well. Heart, lungs, ears, nose, throat all look good. All my parts are intact and working. So then what is wrong with me? Why do I struggle to make it from one day to the next. Why do I find it impossible to hold a job, take care of myself, and have a relationship? Why is it that a normal day feels like I have earned a one day pass to heaven?

High blood pressure, acid reflux, gastritis, migraines, astigmatism, food allergies/intolerances/sensitivities, vitamin deficiency, vertigo, anemia, HPV, ADD, hypersensitivity, PMDD, cyclothymia, bipolar disorder, depression, anxiety, stress, insomnia, lyme disease, chronic fatigue, fibromyalgia...

All of these have crossed the lips of one doctor or another in the past five years. I am not even sure anymore which I have or don't. Or which is causing which symptoms. What I do know is that most of them are chronic and all of them are debilitating in one way or another. And they are invisible to the casual observer.

You can't see my high blood pressure.That's fine by me. I am embarrassed to even have it at such a young age. No one would deny that I have it. It can be objectively measured. Knowing the consequences it can have, no one would deny me treatment for it.

You can't see my acid reflux or gastritis. Unless of course you want to tag along on my next endoscopy where you will see the damaged pre-cancerous cells brought on by 10 years of undiagnosed and untreated GERD. A strict regimen of carefully timed pills keep the acid down and have allowed my body to begin healing. This is measurable. This is fact. And I doubt you would argue me on that.

So what of these other so-called illnesses? The ones that exist in my mind. The ones that truly are invisible. There is no truly objective measurement, or test, or scan, or scope that can show them to you.

How do I prove to you that I have ADD? I can only describe the symptoms. If I am doing a good job of managing it, even they are undetectable to an outside observer. On a bad day, they are nearly comical.

I have entered and exited every room in my house five times looking for something I was holding ten minutes ago. I have exploded a pot of hard boiled eggs because I got distracted and forgot I was cooking. I am currently re-washing a smelly load of laundry because for three days every time I remembered to switch the clothes to the dryer I promptly forgot. I spent a whole day retracing my steps because when I changed locations I forgot why I was going to the next place, but remembered when I went back to where I had the idea.

Sure, people do these things all the time. But this is nearly constant for me. And it is exhausting. All the extra walking. Being late because I can't find the shoes that I just wore yesterday. Keeping up with all of my little tricks and habits that I maintain to keep my life in order. My brain is even tired from fighting to think about one thing at a time lest a new thought come in and push out the other one while I still need it. It can take every bit of discipline to complete one task from start to finish without getting distracted by ten others. And that is why it takes me twice as long to leave the house, or buy my groceries, or write a hub, or do just about anything.

Yes, I know it is annoying. I hate it just as much as you do. More even, because I fight with it every day. I am trying. And there is not much else I can do about it. So cut me some slack already! Or instead of yelling at me to hurry up and make it worse, remind me to focus. That might actually get you somewhere.

Why don't I take one of those pills that are so popular? I have tried. Adderall. Strattera. Concerta. Focalin. Dexadrine. Nothing works. Or they make me feel so horrible that I'd rather manage the ADD than the side effects. Why am I forced to suffer the symptoms? I have a feeling it has to do with one of my other "fake" illnesses.

Bipolar disorder. I am not so sure how definitive the diagnosis is. I have not been able to bring myself to ask point blank. It could be cyclothymia, or "bipolar light". There is no magical test. It can take years to diagnose. This is the one I wish you could see the most. The daily torment of moods and feelings that seem to pick themselves without my control. Happy some days, or some hours, depressed the next. To a normal person these are just moods, and moods change. People tell me to calm down, cheer up, or ask what's wrong with me, or tell me to snap out of it. Telling someone with bipolar disorder to cheer up is like telling someone to just stop being diabetic. You can't think it away. You can only manage it.

My ups are not so bad, only hypomanic. I call her "Shiny Happy Dana". She wants to play and do everything and show you everything and tell you everything like a kid with a toy. She wants all of your attention like a puppy. I happen to like her. I just wish she was a little more goal directed. It would be nice to get something done with all that energy. I have heard that she is annoying. My best friend says she's scary.

Better that kind of scary than "Mean Mommy Dana". She does not want to play. She is grumpy and wants to be left alone. She hates everything and everyone. And if you don't stay out of her way you risk running into "The Bitch". She is merciless. She wants to punch someone hard enough to break their jaw. She can feel her hand making a fist. And she has no idea why. She is scary. She has no soul. At least that's what my mother told me.

I know it's not normal to want to punch innocent people. That doesn't keep me from wanting to. It just keeps me from actually doing it. Yes, everyone has bad moods. But not like these. And not without cause. Imagine your worst mood. Times it by ten. Now give someone else the switch to turn it on and off. Still want me to just smile and cheer up?

And then there are the mixed moods. When I am happy and sad and brave and scared and optimistic and hopeless. I want to laugh and cry and sing and scream and whisper and yell and dance and kick and hit and rip and tear and sway. Those are the most uncomfortable. The ones I want to stop the most. The ones that drove me to hurt myself. Those might be the ones you will never understand. Just trust me. It's hell.

That's all I ask. Trust me. Believe me. When I say I am having a bad day, it is epic. When I'm tired I don't mean I need a cup of coffee. I mean that I am tired to the core. Someone has replaced my blood with lead. Has sucked the energy and joy and life out of my very being. Wash the dishes? You might as well ask me to drown a puppy. When I say I didn't eat it means that I spent the morning forcing myself to swallow even a bite of what one week ago was my favorite breakfast. When I tell you eight hours of sleep a night isn't enough, I need 9 or 10, I am not making it up.

I can still hear the disbelief in my boyfriend's voice. "That can't be right. It's not normal. It's not possible!" Well it is. And I love you when you wake me up early to take me to breakfast. But please please let me sleep! Some days I take a bath because I can't even think about standing long enough to take a shower. Or because I ache from ankle to forehead and the thought of taking another pill just makes me fell worse.

Some days I want to drive into oncoming traffic. Just because. I feel guilty for being alive when I see young people die. They have so much to live for. I would trade places with them for anything. Because I feel like I'm done. I am jealous of suicide victims because they are finally free. They can rest. But I force myself to take care of myself. Because if I don't it will only get worse. I stick it out. I know it will pass. Things will get better. Eventually. Even though in that moment of depression I don't care because the happiness won't last or because I will just screw things up, there is still that tiny rational part of me that hangs on.

You ask me what's wrong as if you actually care. I have no answer. The answer is everything and nothing. Sometimes I just cry. And what do you say to me? Cheer up. Smile. Get some exercise. Eat healthier. Get fresh air. All wonderful advice. And some of it helps. But I would rather you keep the cliches to yourself.

The only thing that really works for me has been medication. Until it stops and I have to search for the next one. So why take any at all? Because, at least right now, I can no more give up my meds than a diabetic can give up insulin. I hear it has been done. I would like to think I can live a med free life. But to date my attempts have met with disaster. So I keep on looking for the right ones. And I deal with the side effects. There are plenty. And they are just as real as ones from real medicine. For one thing, I have gained 60 pounds. I know you think its because I eat too much and I don't exercise enough. Do you realize that I fight every day just to not gain a pound? So excuse me if I have a hard time losing a few. Would you be so hard on me if I lost my hair? Would that be my fault too?

None of this is my fault. At least that is what I try to tell myself. These illnesses are not me. I am intelligent, capable, kind, generous, hard working and so many other good things. And that is the me that I fight every day to be. On my good days I am that person. And I think that if I could just feel like this every day I could do so many things. So when I seem lazy, or unmotivated, or flaky, or irrational, or grumpy don't judge me so harshly. I don't want to be any of those things.

I want a good job, a clean house, a social life. I am trying. But I am new at this. And I am exhausted. But I am not giving up. So believe me when I say I am not well; when I say I am trying. Try to understand. Cut me some slack. Don't be so quick to judge. To criticize. My illness might be invisible, and it might be in my head, but it is real.

Those of you who are living with an invisible struggle, I hope you take some comfort in knowing that there are others out there that are going through similar things. And we understand. Those of you who are lucky enough to be healthy and happy, don't be so quick to judge other's actions or life choices. There might be something going on that you can't see. I hope this hub has helped you to understand.