Things Only Spoonies Understand

When you are chronically ill (AKA a spoonie) you have certain things in your life that those without a chronic illness never have to deal with.  Today we are here to address some major things that only spoonies will understand.

1. You are practically a pharmacy: When you are chronically ill, you are easily on what seems like a million and one different medications.  Your dresser, nightstand, bathroom, etc. becomes a personal pharmacy.  You may have it in a box, or container somewhere, but there are days when the pharmacy takes over.  You have a collection of pill bottles of every size, and practically live at the pharmacy.  Medications rule your life, and your body knows it.  Your pharmacy is your life line, and you know that you live surrounded by pills.
2. Medication side effects: There are no good medication side effects.  They are either uncomfortable, bad, or downright awful.  
3. Making plans, and then having to cancel: Flares and bad days always seem to know the time to hit.  Not when you are sitting at home, but when you are planning to go out.  Having to tell those you are going out with that you cannot can go either one of two ways.  A) They either completely understand or B) They take it as you blowing them off If they understand, they are amazing, more often than not they may be a spoonie themselves.  Or, they may just know you well enough to understand that you would much rather be out with them instead of sick in bed.  If believe you are blowing them off (which sadly happens a lot) it hurts.  Do they think that I want to be this sick?  
4. How are you?: This question is an adventure.  You know that they believe they want the whole truth, but do they really?  Some people can handle the truth.  They will not freak out if you said that you spent the past weekend in the hospital.  They will understand if you say that you are having a bad day.  Others freak out.  It’s a simple fact of life.  They want to be able to hear what is going on, but if you say you went to a routine appointment they will panic.  It is almost as if they believe you are made of glass, and that they are going to watch you shatter.  
5. Your body really sucks sometimes: Chronic illness is not pleasant.  You live your life dependant on medications and treatments.  You practically live at the clinics you are a part of, and your body decides to give up on you.  Your body’s job is basically to fail, and to give up.  
6. Wanting / not wanting a new diagnosis: Some days you desperately want everything to be explained.  You want an answer for the symptoms you are experiencing, but that means that you need a new diagnosis.  While you do want an explanation, a new diagnosis is not great at the same time.  That can mean more appointments, tests, and medications.  That’s what makes you hesitate.  While a diagnosis can open doors, it can also close some.  
7. A cure…: Everyone hopes for a cure.  However, for most of us that sadly is not going to happen.  It is disheartening.  All you want is for everything to magically be fixed, but life doesn’t work that way.  Life can be cruel, and this for sure qualifies as cruel.
8. Beeping: I honestly dream the sounds of beeping IV poles, and other monitors.  The beeping is constant, and is everywhere.  
9. You are a pro at being in the hospital: It’s a sad fact, but you are a pro at being in the hospital.  You know just what to pack (you might even have a bag set aside for it already) and you are particular about it.  You have your special items like a blanket, socks, or pj pants that you make sure you bring.  You know practically know EVERYONE at the hospital, and can recite the menu by heart.  You know all the tv channels, and know the halls like the back of your hand.  You can work all of the monitors, and the nurses know it.  The call button is your friend, and your nurses are your family.  
10. “You look healthy”: Any variation of this comment makes me want to scream.  I am not healthy, I am a spoonie.  I have days where I cannot for the life of me leave my bed.  I have days where side effects are basically trying to kill me.  Saying this to me is an insult.  While you may have good intentions, that is incredibly rude.  

When you are a spoonie you have certain things in your life that leave a mark.  There are things that those that do not have a chronic illness will never truly understand.  That’s why spoonies always seem to get along almost immediately.  They understand what is happening to you in a way, and understand the experience.

WE BELIEVE IN YOU!

-Nemo, Tremors, and Secret Agent Puppy