Spoonies. If you're not familiar with the term, it was coined after a poignant article from a fellow chronic illness fighter went viral within the chronic illness community.
I've learned a lot of lessons since becoming a "spoonie." Here are ten of them I'd like you to know:
1. Doctors are not right 100% of the time
I am convinced that some doctors just get their information from WebMD. No one's health journey looks the same, every case could involve something a doctor has not dealt with before. So it only makes sense that they can make mistakes and look over things. At the end of the day they are humans too.
2. Trust yourself
You know your body better than anyone else; if you know something is not right do not stop fighting until you get the answers you need and deserve. At the end of the day, you will be the one suffering if you settle for mediocre care.
3. Go with the flow
I left home for my freshman year of college and nothing went as planned. I ended up having surgery at the end of my first semester, was forced to medically withdrawal from four classes, and ended up going home at the end of the year. It happens. Embrace the madness when it is thrown your way, who knows, it might just lead you to exactly where you are meant to be. Cliché, but true.
4. Your friendships will be tested
True friends try their best to understand, but that does not mean that they won't get annoyed when you have to cancel plans three weekends in a row. It just means that they will give you another chance and another after you mess that one up as well. Friendships do not last when people are more concerned about themselves and what they want.
5. Dating sucks
I am twenty, so getting to know someone on a romantic level sucks anyways. However, it is even more complicated when someone thinks you are just blowing them off when in reality you do not know how to explain that you are out of "spoons" for the day.
"No I am not lying, I promise I really was on the way to our date. I just ended up having to make a stop by the hospital." Don't think for a second that I haven't actually had to say that before.
6. You can bleed from absolutely anywhere, including your tear duct
I am not sure if I was just naïve to this one or if this would be as shocking to everyone. It is something that should only be seen in horror films.
7. You'll discover fears you never knew you had
I am claustrophobic. Okay, maybe only during an MRI on my brain. Still, I did not know I was capable of having a panic attack as my head was squeezed into a tube and my whole body went through something that feels like a coffin.
8. Working out is a wonderful, wonderful thing
I have accepted looking like a little old lady who has no clue what she is doing in the gym. I end up hunched over the nearest piece of equipment every few minutes to prevent myself from falling out on the floor. Even though my body often feels even worse from a workout, it strengthens me mentally and physically. I have the physical strength to get through a full shift at work now. There is something addicting about pushing my body way past the point I know it should be able to go.
9. Things can change at any moment
During this journey I have learned that you are not guaranteed anything no matter how much you think you may "deserve" it. My dad always told me that if you wanted to make God laugh, tell him your plans.
10. You are strong
This is something that is very odd to admit, because on a good day I still do not feel strong. That was until I realized that strength comes in all forms, and I think the biggest form of strength is choosing to continue to fight when you want nothing but to give up. I do not know how to give up now.
