It’s been almost two years. On a Sunday in November of 2013, after having attending a military ball with my husband, I woke up unable to walk, covered in lesions, with multiple joints filled with fluid. I was taken to the hospital and we began a long journey of tests and doctors visits, and more tests and more doctors, and then a journey to regain my ability to walk and live an independent life.
Nearly two years later, still housebound, it feels like a lifetime ago that I was at my rheumatologist’s office three times a week. Two weeks ago, I was down graded from visits every two months, to ever four and it actually terrifies me to think of going that long without seeing my doctor because I still need her confirmation that I’m sick, not crazy.
You see, when you get sick, doctors have the answers, right? You feel wrong and you go to the doctor, maybe have a test or two done, and bingo bango, here’s your diagnosis.
Then, with shiny new diagnosis in hand, your doctor fixes you. Maybe it’s medications or life changes. Maybe it’s rest and water, but the doctor has the answer. Always.
So, when your doctor doesn’t have the answer, and neither does the next one or next one, are you really sick? Or are you making it up?
It’s truly tough to know.
Is it in our heads? These autoimmune illnesses? Are we being dramatic? Or big babies? Are we, collectively as a group, just a bunch of attention seekers?
Of course we aren’t. And even the person in our life who is the least understanding about it would not say that about you or your illness. So, why do we say this to ourselves? Admit it, if you have an autoimmune disorder, you have at least once.
The problem is, in my eyes, that we have spent our entire lives being told that you get sick, you see a doctor, you get better. But what happens when that is not the case? What happens when doctor after doctor doesn’t have the answer? Self doubt. We begin to question us, our strength and ability to endure discomfort, and even our sanity. If the person who is supposed to have the answer doesn’t know, or is questioning if you are really sick, or is saying you are making up your symptoms, the first person you are going to blame is you.
I was in the hospital for two days. In those two days, I saw nine doctors if I’m remembering correctly. They even sent in the chief of staff. They sent in nurses in training, nursing students, EMT students, you name it. I saw nearly every member of their staff. They were stumped. They took pictures. They called other hospitals. And I sat in a bed terrified.
Then I was incorrectly discharged instead of transferred to a new hospital and ended up having to spend the night in an ER. I was given a battery of more tests. Crazy tests. The ER doctor threw everything he could at me to keep me there and try to figure out a piece of the puzzle (unable to admit me for insurance reasons). Nothing.
I was then granted an emergency appointment with my general practitioner who was going to attempt to get me readmitted. In that time, a Rheumatologist was able to take me as an emergency appointment before she saw her first patient that same day. It was decided that I would see her and she would decide if they should readmit me.
I saw her three times a week for many, many months.
I would lie in bed and literally question if I was truly unable to walk. I had test after test coming back as normal. My lesions were improving. And yet I couldn’t walk. Or couldn’t I? Was I being dramatic about something that should really just be a limp? Am I crazy? Maybe it’s a psychosomatic reaction to stress? Because I bet I really could walk if I really wanted to.
And I can tell you that nearly two years later, if I have a string of really great days, I begin to question if I’m sick. If I’m really still housebound worthy. Because I’m probably making it up now. I’m probably fine, but I’m clutching to being sick because I’m scared to try things that have hurt when I’ve tried before. I’m just being a wuss.
And, if we are all being honest, we have all had moments, whether it was when you were trying to find a diagnosis or on a just really good day, when a little tiny voice in the back of your head whispers, “You aren’t really sick, are you?”
I was hospitalized and then bedridden for six months after that day in November and I spend six months questioning if I was really sick. Hell, I was questioning if I really couldn’t walk! From my bedridden state in my room!
I hear this so often from everyone I talk to. I have friends who have gone through this process after I got sick, some before, and WE ALL have said that we question ourselves, our sanity and even if we really are sick or not. But the fact is you are. Maybe they don’t know what it is yet. That doesn’t change that you know something is wrong, even when some doctors don’t believe you (there are rheumatologist that don’t believe in my form of arthritis. I’m not even kidding about that. They are seronegative deniers). And if you have a diagnosis, whether like me with something seronegative, or a positive blood test of some kind, you are sick. Good days are amazing but don’t let those naughty whispers in the back of your head tell you that you are crazy. You aren’t.
Are you sick or crazy? Why do we doubt we are sick? I think it’s because we are raised to believe that doctors and tests have all the answers. And when they don’t, or don’t believe us, or we have inconsistent symptoms, or symptoms that throw off the diagnosis, it must mean we aren’t sick.
We have to learn to trust our bodies and ourselves. We have to learn to pay attention to what our bodies are telling us and remember that doctors are important, but they don’t always have all the answers. Nor do the tests. And that’s ok. They are still going to do their best to help you, and it doesn’t make you crazy. It makes you a normal person who happens to have an autoimmune disease.