It’s almost November and I’m almost 24. Wow. What a year this has been! There’s been a lot of “good” and a lot of “bad”. This post is kind of a mixed-bag brain-dump-style post. It’s a reflection in some ways and a frustration-outlet in others. This is what it’s like when you’re too much for the medical field to keep up with.
I am a self-proclaimed human lab-rat. I am a never-ending medical file. A human case-study that never ceases. I will always be a roll-of-the-dice diagnostic lottery and a genetic shit-show. I have at least 22 confirmed diagnoses within my mountains of paper and digital medical files and unfortunately there are 2 labels more possibly coming in the future.
Over the last year, I received 4 new definite diagnoses. It seems to be a recurring theme with my health. Mentally or physically, I can’t go a year without at least 1 new diagnosis, at least not lately.
But this post isn’t meant to be about numbers. It’s not meant to be a “who can be sicker” or “who has more diagnoses” competition. This is about the toll that being a walking medical school textbook takes on someone like me. It’s also about my frustration with the medical field.
I learned the 26 letters of the English alphabet when I was little. I learned the little sing-song jingle so I wouldn’t forget the letters and what order they go in. Simple enough. I had no reason to believe that the alphabet would ever take on a whole new meaning to me one day.
Now a days, most of my diagnoses have an acronym: AN, BPD, BP, POTS, MCAS, PCOS, GP, GAD, and the list goes on. My brain has turned into a dictionary of medical acronyms, complex technical spellings, and scientific definitions. Isn’t it my doctors’ jobs to know and remember all of this? haha! Unfortunately, I have to educate a great many doctors on my conditions, especially the ones that don’t fall into each doctor’s particular specialty. I have to know myself and my health almost better than they do. My life depends on my well-earned “Google Medical Degree”.
Mental and Emotional Toll
But I said this post would be about the mental and emotional toll being sick takes, not just the technicalities. So, here it goes.
It’s hard being multi-systemically sick. Having mental, developmental, and physical health diagnoses sucks. I’m constantly playing whack-a-mole with my health. Once I get 1 disorder to calm down a bit, another 1 or 2 of them start acting up. Whenever I think I miraculously have everything under control, something always happens to turn my life on its head again. It’s physically and emotionally draining to an extreme level. One of the only times that I ever seem to have an abundance of energy is when I’m in a Bipolar “up” swing, which isn’t necessarily a good thing, as any mood swing has its consequences.
One of the toughest parts for me is being called a “hypochondriac” by some people or professionals. Despite my having been proven correct about every diagnosis I’ve ever really thought I’ve ever had. Having to fight doctors for testing I know I need and medications (or med dosage adjustments) I really believe are necessary is exhausting. Having 18 different people on my team (not including nurses and doctors’ other staff members) and having to see at least 8 of them regularly is draining.
What do being both physically and mentally ill have to do with one another? Well, when I’m flaring with one of my physical chronic illnesses, my moods suffer. On the other hand, when I’m having trouble with my moods, be it anxiety, depression, hypomania, etc, I take worse care of myself physically. Unfortunately, being both physically and mentally sick is a vicious cycle.
Friends and Family
Another difficult part of this all is trying to explain bits and pieces of it to friends, family, and anyone else who might end up needing to understand portions of it. I understand most of what I deal with because I have to. My life depends on being able to educate those around me. However, it’s not as easy for everyone else. It can be difficult for those I love and care about to understand how 1 disorder or another came about or why my doctors or therapists say I have it. It’s hard for them to know that none of what I have is curable. Most of it is treatable, but not curable, meaning I will live with all 20-something of my diagnoses to some extent for the rest of my life.
Medicine Can’t Keep Up With Me
It took me 8 years to be correctly diagnosed with Bipolar. 18 years for my Autism diagnosis. 7 for Ehlers Danlos and Gastroparesis. 12 for PCOS and probable Endometriosis. 5 for my eating disorder. Doctors and the medical field in general cannot keep up with me. That puts more pressure on me to figure things out myself as they come up and then present the possibilities of whatever I think it may be this time to my doctors. I’ve always been told that I’m extremely self-aware, but I have to be almost hyper-self-aware most of the time. My brain and body are so all over the place that if I’m not hyper-aware of myself and what’s going on with me, I could easily miss something important that my body or brain are trying to tell me.
There are also a bunch of great things that have happened this year too. I just needed to get this piece off my chest first. I’ll make sure to write a positive-updates post soon!
Much love to everyone!