The words “I’m fine” have literally come out of my mouth thousands upon thousands of times. But “I’m fine” doesn’t have the same meaning when it comes from my mouth as when it comes from the mouth of someone who is completely healthy. I have a chronic illness and those words hold a certain meaning for me.
Am I Really Fine?
The answer to that is no. No I am not fine. I am not ok, ever. That’s just the cold harsh truth about living with a chronic illness. No, I do not always feel like death is knocking on my door but I am never completely “fine”. There are good days but the bad outweigh them a hundred fold. So when I say I’m fine it holds so much more meaning to me than anyone could possibly think.
How Do I Define “Fine”?
Fine, healthy, well. That’s the true definition. To me fine means…
I don’t want to burden you with my problems.
I don’t feel like dying at the moment.
My body is partially allowing me to function.
I haven’t cried today…yet.
You wouldn’t understand and it would take too much energy trying to explain.
I may look healthy on the outside but inside there’s a war raging.
Why Being “Fine” is So Hard
Being fine or looking fine doesn’t make life with a chronic illness any easier. In all reality it makes it much harder. Because I look “normal” or “fine” then it takes me a lot more work for people to understand and for me to explain why I have to miss things often. Because of my chronic illness I am disabled though I don’t look like I am. On the outside I look like any other 30-something. And on the inside…my body is frail and weak and feels like I’m an 80-something year old woman.
When I park in a handicap space, slap up my placard, and get out to walk into a store I often feel the stares. The ones that seem to be burning through me and giving off the feeling that I shouldn’t be there. I feel like I have to explain to these people that I am actually disabled and it’s a hidden illness while rattling off the facts of my disease and how it isn’t something that they can see. Because of this I often don’t park in those spots and just suffer walking whatever distance to the door just so I don’t have to feel like I’m being judged by people I don’t even know.
Time Goes On
As time goes on my illness does not get better, it does not get easier. In reality things get worse. My body breaks down more. The medications that keep things on a level plane wreak havoc on my body and they too start to break me down. After a while not only my body suffers but so does my mind. Who could live this long with this many issues and not have any sort of mental issues?
Dealing with the Mental Aspects of Chronic Illness
The pain is something that you can get used to. It’s always there and after a while it’s something that can be learned to deal with. But the mental instability is not so easy to cope with.
There’s the panic and anxiety of never knowing what’s next, what will fail you and when, when you’ll be sick and for how long. It’s a game of Russian roulette and the odds are always against you.
Then there’s depression. That deep dark pit that comes with being constantly sick and in pain. It’s something you can never get rid of and often it’s even hard to get any better from. You feel like a burden to everyone around you and like you’re a failure at life.
There’s embarrassment from constant cancellations or getting sick in the middle of something or being weak around others.
Then there’s isolation. You become isolated because people don’t understand, don’t want to understand, or just get to the point where they feel like you are always making excuses. The isolation and loneliness get to be unbearable.
Say it with Me…”I’m Fine”
Most of the time telling everyone “I’m fine” is so much more simple than telling people what you really are going through. Most of the time it’s easier to just go through alone. People often think that since this is something I deal with on the regular and for so long now that I should be used to it. But I’m not. How could you be used to all of this? Why would you want to get used to it?
I’m always told to take care of myself better, to rest more. People think that with every time I am sick I should become better at handling it. That’s not the case. It’s actually the opposite. Every new sickness makes me think more about what I’m missing out on, what I could’ve been doing, what I should’ve been doing, why this has happened to me, what I’ve already lost and what I’ll lose next. It makes you sad and then frustrated and then so angry you want to scream.
Being chronically ill is exhausting. My body, my mind, and my spirit are just worn out. There is no finish line. No end in sight. This will not go away. This will not get better. I am not negative Nancy and only looking at the bad side. This is the honest truth.
Looking to the Future
With medications, with surgeries, with therapy I can hope to live a somewhat “normal” life on the outside, but still on the inside I will be fighting. My body will be at war with itself. I will be screaming and crying on the inside. Such is my life.
The pain doesn’t go away. It rarely gets better. It’s just something that now after 19 years I have grown accustom to. It’s something that I wake with and something I go to bed with. I know it will be there tomorrow and it may be a little better, it may be worse, but I know it will be there because it never goes away.
The same with my exhaustion and anxiety and depression. They will all be there. And the biggest of them all, my illness…my sickness, being sick, feeling less than human…that will be there. Day in and day out it is part of me.
I am to the point in my life that I will no longer let people make me feel bad by their words or their actions or their stares. I will no longer feel like I have to watch what I say because I may be thought of as whiny or always negative or constantly complaining.
Yes…that is me. That is this disease. Live one day in my shoes and tell me that it’s easy, that you can handle it as well as I do, and that you don’t want to complain or whine or cry or scream or curse the sky. Tell me that you don’t hate the world for all that it has given you…the pain, the sickness, the sleepless nights, the medication upon medication and then all the horrible side effects that go along with them. Tell me that you can do this, because I can’t.
It’s Been Way Too Long
I’ve done it for far too long and I’ve held it all in trying to portray this person who is strong and wise beyond their years. I am not that person. My strength comes from necessity. I am wise because this disease has forced me to be. But I am done being a rock and holding my tongue. I. Am. Done.
I will say what I feel and what I want. I will act how I feel. And I dare one person to say something to me, to look at me the wrong way. I won’t take it anymore because I don’t have to. I deal with enough daily and I don’t need or want any more judgement from anyone especially those who have no idea what I am going through and what I have gone through. If you have not walked even a moment in the pain and the sickness and the frustration that I have had for all of these long years then you don’t deserve to tell me how I should be acting, speaking or not speaking.
Try Being My Kind of “Fine”
Try to place yourself where I am. Feel the constant pain. Take the pills…so many pills. Deal with the exhaustion and lack of sleep. Become sick. Now…be strong. Hold it together and don’t let anyone know that your body is attacking itself. Don’t let anyone know how angry and depressed you are. Don’t. Let. Anyone. ANYONE. Know. It’s the most difficult thing you’ll ever do. I know it is for me.
So, no I’m not fine. And I never will be.
Can Someone Please Tell Me What “Fine” Looks Like Anyway?!