I feel the past couple years of my life can be summed up with a very simple phrase: we just don’t know.
These are the moments when I wish those superbly intelligent, genius, almost superhuman doctors we see on television were real. I wish they could look at me, do something quirky, and brilliantly diagnose me, all within an hour period with brief commercial interruptions. But real life doesn’t look like that. Real life is hours spent in waiting rooms, partners who love you who are pained they can’t fix it, random unexplained symptoms, awkward explanations to work friends as to why you just can’t spend your Friday night “out with the girls” because you need to be in bed at 9:30 to function normally. Real life is people asking you why you lost weight and making you feel guilty for it as if you did something wrong. As if you had control over it. Real life is wondering if you will ever get an answer; if you will ever put a name to the flurry of strange things your body seems to do every day.
Real life doesn’t have a clean, solvable, scripted ending.
I am very, very blessed to have a partner that cares so deeply about my well-being. Since we have been together, I have been sick, on and off. And without him, I may not have understood how abnormal my body was. If you have never known normal, it’s hard to differentiate between what is and isn’t usual behavior. Even as I type this, I am fatigued, mentally foggy and physically slow. I am in my mid-20s, active, hard-working and a healthy eater. I am a healthy thin for my height and age and I get about nine to ten hours of sleep a night (I don’t function well on any less). I stay hydrated, I eat my vegetables and fruits, I don’t have high cholesterol or blood pressure, I am not anemic or deficit in anything, and I, unlike many of my contemporaries, don’t drink coffee or alcohol like its going out of style. I limit myself to a cup of coffee a day, and I can barely finish a glass of wine on my own.
In short, I am disciplined. I am in control of what I can be in control of. And my body still doesn’t work properly.
And we still don’t know why. We know some things, but not the whole picture. My doctor had an idea and I prayed he was correct so I could finally have a full diagnosis, even if it would dramatically alter my life. But my blood panel came back without stain or strain. Then I found out after the fact that they only tested for one thing. They didn’t test for other conditions with similar symptoms. Just one. Then, they ruled that out and instead of digging deeper, they said, “Take ibuprofen for the pain.” Right, because pills are always the answer, right? But I compiled a list of symptoms the other day that were out of the ordinary and there were over forty. That makes it hard to swallow the whole “just take an ibuprofen” bit. Because that doesn’t really help. You don’t put a band-aid on a bullet wound and hope you are okay. You dig that bullet out. You bandage that wound up properly.
With my health insurance being the way it is (we have a terrible health system in America), I can’t get more tests without the necessary orders from my doctor, and I can’t get in to see him for another month. And then, even after he orders the tests, they have to be approved and scheduled. In short, that means another two or so months without any additional tests. The system is so bureaucratically congested that when people need help, they can’t get it. Patients are numbers to doctors because they have such a large case volume. Even the best doctors can’t give your body the individualized attention it needs for a proper diagnosis. So, they just treat immediate obvious symptoms without digging for the root of the problem.
So, for now, I don’t have answers. I don’t have a reason. I don’t have ultimate control. I have to make my excuses to my friends and family when I just don’t have the energy to go out, to come over, to meet up for coffee. I have to explain myself to my bosses that I need to come into work a little late so I can take a trip to Urgent Care because my fatigue is so overwhelming. I have to look at my wonderful fiancé’s worried expression when I give him the honest answer to, “How are you feeling today?”
What I am comforted by is my faith, the assurance that life is never easy for anyone and it doesn’t promise otherwise, and that we are all dying a little bit every day. So, whether we feel poorly or not, we have to find joy in each moment. Because it won’t come again. Christ says in John 13:7, “What I am doing you do not understand now, but afterward you will understand.”
Today, we have no answers. Tomorrow we may not either. And that’s okay. Because what I don’t understand, God understands.