There was a knock at the door. In walked the doctor. I had been in the hospital for eight days having numerous tests run to find the source of my illness. At this point, I had searched for eight long years to find a diagnosis. The only reason it became imperative to find the answer was because six weeks prior to my hospitalization my body broke down. My illness intensified within a split second. Literally one second I was speaking with someone and the next I couldn’t walk without assistance or feel my limbs. I had constant tremors and neurological symptoms that are indescribable. I lost complete control over my body. I was confined to a hospital bed not allowed to stand up. I was desperate.
The doctor (electrophysiologist) sat down, leaned back and crossed his legs very nonchalantly. He looked at me…let me rephrase that…he looked my direction. I was just another patient to him. He didn’t know I had lost so much of my life in an instant. I couldn’t drive, take my kids to school, walk to the bathroom without assistance, or go anywhere for that matter. I was sleeping sitting up on my sofa because if I laid down, I would get sicker. I had nonstop tremors. But, that wasn’t his concern. He was there only to give me a formal diagnosis.
If you are like me, and have searched for years trying to find out what is happening in your body, this moment is a big deal. It’s something I had prayed for years to find out. So as groggy as I was, I still clung to his every word. Finally a diagnosis! He said, “Well you have POTS.” He explained medically what POTS was and it brought so much clarity to the last eight years of my life. Finally…it all made sense! At this point, I was expecting a solution and I would be on my way. But that was not the case.
He looked me in the eyes and said, “You have an incurable illness. There are support groups for people like you.” People like me? What kind of person was I? I asked, “Can you give me any ideas of how to mange this illness? I cannot function at this level for the rest of my life. I have kids at home that need me, a husband, a life!” He again looked at me without a care and said, “Nope, you will have to just live with it. It’s not curable so get used to this new normal.” My heart sank. I asked again with more desperation, “Isn’t there ANYTHING I can do to not live the rest of my life this way???” He simply said, “Nope. If I were you, I would find a support group. This is your life now”.
Devastated and speechless I sat there as he asked if I had any more questions. More questions??? I begged him for a ray of hope or something I could hold onto to believe I would improve, and he shot me down each time. No I didn’t have any more questions except, “Can you take your crappy bedside manner with you as you leave? And the smugness can go as well. Oh, and maybe when you tell someone they will never get better, you could attempt to look like you care. You have the arrogant physician thing spot on though. I will give you that.” But I said none of that. I was too tired, too confused, too sick, and totally broken. I cried for hours.
When you have been chronically ill for years, receiving a diagnosis is your dream! Logically the diagnosis is the first step to healing. But for many, it’s merely a name. You know what to call it, but improving or finding quality of life is a completely different battle. It’s a roller coaster of emotions. And that is where finding a good doctor can change everything.
After being told that I just needed to find a support group and get used to my new life, I was told there was nothing else they could do for me. They transferred me to Duke because they specialize in POTS and controlling the symptoms. While being admitted the attending physician said to me, “I need you to know that I am not going to be able to make you better. You are going to get frustrated and all I ask is that you be patient with us. Our goal is to lessen your flare and stabilize you and your symptoms.” Over the next ten days numerous meds were introduced and I was unable to tolerate all of them except for one. I had alot of tests run to make sure nothing was being overlooked. I felt safe there. I desperately wanted to be home with my family but I knew I was exactly where I needed to be.
Again, there was a knock at the door and in came the electrophysiologist. Expect this doctor sat close to my bed and said, “This is incurable. Our goal is to control your symptoms as best we can. And our hope is that you will grow out of this. Unlike many other illnesses, there are people who get better as they age. We hope the same for you.” Finally! Someone handing me hope. I didn’t need him to sugar coat it. I didn’t want him to lie. I just needed to hear a doctor say…”There is hope”.
Fast forward almost three years now. I am not bed bound constantly. I can drive within a two mile radius of my house some days. We rock the wheelchair wherever we go and don’t think twice. My life changed in an instant and the process of finding life in this season has not been easy, but it has been possible. Last week I had an appointment with my primary care physician(I have been with him for almost 5 years now). I am not sure words can possibly express the gratitude I have for his constant support. These past three months have been mentally and physically draining. It has been more intense and I have walked through those moments of just wanting to give up. Why am I fighting so hard to beat an illness that clearly is beating me?
I think he could see my struggle when talking to me. He said something every chronically ill patient DREAMS of hearing! He said, “I would never let you walk through this alone. You are doing the best you can. Your attitude through this whole thing has been one of your strengths.” I said, “Stop!” He looked up at me as I was fighting back tears and I said, “I don’t think you realize what a powerful statement that is to make. It’s a dream to have a physician that cares enough for his patients and is invested in seeing them thrive. We go to so many doctors trying to find one that gets it. It took me six years to find you! Thank you!”
He will never know what that one statement meant to me. I walked away feeling so much better than when I walked in. Not physically, but emotionally. When you find a physician like I have, it truly changes everything. If you have been searching for a doctor and continue to be disappointed, I encourage to not give up. It took me six years to find mine, and I do not take his medical care for granted. I believe for better days ahead. If not, I have a doctor on my side that will walk with me through this, and that is a game changer. Don’t give up!