here’s the negative.
my body terrifies me. to be chronically ill with no answers is to live in hell with nothing to show for it. loose ends, unanswered questions, constant pain but no diagnosis, belittling, misunderstanding. just a pile of symptoms & failing organs with no explanation. i don’t know if i get a tomorrow, a next year, a long life… & plenty of “it’s going to be okay” & “stop worrying, you’re fine” sentiments are shoved down my throat but the truth of the matter is that, was life ever really guaranteed to us? so many people die unfair, early deaths. & unless i live like there is no tomorrow, i will leave this earth with incredible regret. it’s just a scary life, not knowing when the next blow is gonna come. dealing with the trauma of ER visits & pain strong enough to make you wish you would just die already, even though there is nothing you want more than to live. every day, you’re faced with a battle with your own body. & i wish that there was more that i could do. people will keep telling you to be strong, but no one will tell you that it’s okay to fall apart every once in a while. everyone will tell you to just keep fighting, but no one will allow you the luxury of giving up for the day. to be chronically ill is to live in hell, but be forced to find the bright side for the sake of those around you. it’s an utterly ugly life.
here’s the positive.
you may not have your health tomorrow. you may not have it today for that matter. but those few moments when you have about half of your health back… when you’re doing better mentally, so you can fight harder than usual… when you can think a thought other than “God just get me through this”… you are a professional at taking advantage of those moments. your very heart knows how to love with an intensified love. your lungs know how to deeply appreciate fresh air. your skin learns to soak up every available ray of sunshine. your hair catches every breathe of wind the atmosphere provides. your spirit prays the deepest prayer of praise, because for once, it can actually peek through the pain.
you learn to leave every conversation with an “i love you”. you learn to never go to sleep with any anger in your heart. you learn not to get worked up about the little things. you learn to appreciate every little act of kindness. you learn that there’s a difference between letting go of unnecessary negativity, & allowing yourself to not force a smile every day. you learn to allow yourself to be genuine & raw. you learn to be kind to yourself, & you learn that you deserve it.
here’s what you should do.
there’s a reason i no longer say “it’s going to be okay” to anyone i know that’s chronically ill. the reason is that it’s almost just counterproductive to focus your “encouragement” on the situation. because, in our cases, the situation may never get better. we don’t have an end in sight. we have to fight day in & day out, never knowing if it’s going to get better, or get worse. we have to exist in the awareness that tomorrow, we may have to conjure up enough strength to endure a hospital run. maybe you’ll be lucky enough to spend that day in bed, but maybe you won’t. that’s why, when attempting to comfort someone who is in constant suffering, it’s better to steer the encouragement away from the situation.
focus on letting the individual know that you are concerned. that you know they are suffering & that you are sorry. because we are constantly invalidated, & constantly feel that no one is taking our suffering seriously. so to hear someone even just say that they are sorry, means the world. we get a lot of “you’re gonna be fine”, & “it’s gonna be okay”. even a lot of “be strong”, “you can do this”, & “you’ll get through this”. we don’t get a lot of “i’m so sorry that you aren’t fine” or “i’m sorry that it’s not okay”. we are ever allotted a “it’s okay to not be strong enough for this” or “you shouldn’t have to do this or go through this”. i know in all efforts to comfort, our original leading is to be positive. but sometimes, just to have someone acknowledge the pain you are in is the only comfort you need. & after you connect with them in this way, they are more likely to accept words of encouragement such as “you can do this”, because they know that you understand how difficult it is to do so.
here’s our apology.
please don’t be angry at us. please don’t call us selfish. we are fighting oh so hard to live. we are so sorry that sometimes, we don’t have the energy to make it out of bed. we are so sorry that we are not healthy enough sometimes to even walk through the mall with you. we apologize that hanging out sometimes means sitting in bed & watching netflix together, & our adventures consist of trips to the pharmacy. we may not seem like the best of friends to you, but we treasure every moment together that you allow us to have. we spend a lot of time alone with our thoughts, so we love your company. we are sorry if you don’t love ours. we are sorry that we have to be particular about the temperature of the room, the type of food we get, the brightness of the lights, the type of transportation, the amount of noise, or the environment that we’re in. any irregular situation can cause our body to spiral out of control. we hope we do not come across as selfish when we are trying to ensure that we stay sane, we stay healthy, & we stay out of the hospital. we live with full knowledge that our life is a burden. we live with the gravity of the toll that we take on our loved ones, resting on our shoulders. we know we are difficult. but try to understand, our lives are difficult, almost impossible to live. we are trying. we are sorry.
here’s the point.
it’s okay to not completely understand the life of a chronically ill individual. we are complicated human beings, we know. that being said, any effort to understand will help the world be a kinder place. spread awareness. educate yourself & those around you. make an effort to care for the ones you love, because you never know who is suffering in silence. give lots of hugs. keep an open mind. be understanding. we thank you, ever so much, for doing so.
your chronically ill friend.