The Lonliness of Chronic Illness

For me, I think the hardest part of dealing with poor health is that it is a lonely, lonely world. Sure there are people out there that care and can empathize and, of course, there are doctors, but it's not the same. Think of it like this: When your fingers, ankles, and hips are aching, throbbing and swollen; simple things like sitting, walking, climbing stairs and touching your fingers to your thumbs is not only extremely painful but not always possible. Pain medications make you shaky and nauseous which upsets your already sensitive stomach. Everything you eat seems to make your stomach worse; so you're literally afraid to eat. You put off eating until your blood sugar gets low which makes you more nauseous and gives you an unbelievable headache. Once you eat you start the game of trying to stay as still as possible because if you move the food won't stay down. If you do manage to keep food down, then it is only a matter of time before you begin to have sharp stomach pains and potentially diarrhea. And...the part that makes this so lonely is that no one is inside your head feeling what you're feeling. No one understands if you breathe wrong you're going to get violently ill, or how frustrating it is when a simple task like holding a fork is more than you can bear. No matter how much friends and family can empathize and doctors take down details to study and diagnose there is no escape for the torture of living with all of this, alone, inside you're own head.

I have tried my best to verbalize what this all feels like on a day to day basis, but it's hard to make someone understand that has never lived an hour in my body. It's impossible to imagine what it's like unless you've lived it. And the mental torture of trying to explain to someone only adds to the pain. For example, when meeting new people or talking to old friends and acquaintances, the inevitable question of, 'how do you feel?' always comes up. It has become one of the most agonizing questions because it is hard to verbalize the daily struggle that life has become. Or, how the most exciting thing that has happened to you that month is you have gone twelve days without throwing up. This all hits especially hard when compared to the goings on of people around you like graduations, new jobs, weddings and kids. There is a whole level of mental torture that is unseen, and for some reason seldom talked about.

Medications also play a big part in messing with my mind. They can make me sleepy, dizzy, emotional, restless, depressed, sick, and anxious, cause headaches, sensitivity to light, or make me unable to wake up. If the stress of the illness isn't enough, the side effects of medications is enough to push you over the edge. Sometimes nights are unbearable and it's yet one more aspect to this life that unless you've lived it you will never understand or fully appreciate. I don't intend for this to sound as bad as it probably will but after living through restless, stressful, emotional and nauseous nights I can see how people have accidentally overdosed on pain or sleeping medications just trying to get the pain and agony to stop. Think about this, don't just read it, really think about this and imagine how you'd feel: you're lying in bed at night, you can't stop an extreme restlessness and urge to move, when you do move your joints are so tender and swollen it hurts and makes the nausea worse, you're exhausted, you're on the verge of having an emotional breakdown from the stress and anxiety and medications, and the tears won't stop, the only thing in the world you want is just to fall asleep until it's all over. I've passed many nights this way or doing leg lifts on my bathroom floor in between throwing up, or walking stairs, praying it will all end and then waking up with tear stained pillows and tissues around my head.

Over the last few years I have lost touch with many friends due to my medical issues. I don't blame them or myself, everyone has to move on with their life but on those tough nights, or those impossible days, it still hurts. It hurts to see your friends and families lives going on with the feeling that life has left me stranded in limbo. I recently was watching a show about service men and women coming home from deployment and a sailor made a comment about how after deployment you come home and your six months behind the rest of the world so you have to play catch up. I thought about that for a while and it has left me a little envious. While he gets a chance to catch up, I don't. I will never have a break from the medications or the conditions, the stress or the feeling of being trapped in my own head. I also do not get a break to live life like a normal twenty five year old. I will probably never be able to finish college, I will probably never be able to hold down another job, or even own my own house. I won't be able to travel to the places I want to go, nor do all the things in this life that I would like to do. The only thing that's more painful than that realization is communicating it to those around and hearing their past adventures and plans for new ones.

I know that no one has ever thought life was fair, and these were the cards I was dealt so there is no point arguing with the dealer, however, it does make this life a very lonely place to be. Part of me wants to scream it out loud and force everyone around me to realize and understand what day to day life is like and how I feel in those agonizing hours. The other part wants me to lose myself in denial of what my reality is. For now I suffer in silence except writing here and talking with those few other lonely souls I come across, partially because as much as I try, no one will ever understand the life I live and partially because some days the pain is too much to communicate.

I would never wish my life on anyone, but I still wish I could make people understand. Understand things like how alone I sometimes feel in this world, and how there are times when I think I'd do anything if I could just make it all stop. If you happen to be reading this and have never dealt with issues like this I am begging you to stop and think about how your life would be different, and how lonely the world would be. Think about the blessings you have and that you don't pass your time in such ways, and the abilities and opportunities you have because not everyone does, and there are some people that would do almost anything to live a "normal" life like that.