Diagnosis Process

Developing and managing a second disease requires bravery.

This past Fall I felt sicker than I have ever been in my life. Fatigue covered my days like heavy fog. Nausea haunted me, and I found myself vomiting a couple days a week for no good reason. I forced myself to go to class and see my therapy clients, but otherwise spent the rest of my waking hours in bed.

It was such a confusing season, largely because fatigue is a big part of my autoimmune disease (Ankylosing Spondylitis). I'm used to debilitating fatigue, but this was worse. Oddly, my joints weren't hurting, and usually my fatigue corresponds with intense joint pain. When I start to feel sick, my first thought is that I am in a flare-up of my disease. It's usually that simple. When something new hurts--like my eye--I figure, AS can affect that too. (Don't worry, I see a doctor when odd pains crop up!) When that's not the cause, I start thinking I've caught an infection or a virus, because being on multiple immunosuppressant drug therapies definitely makes me very susceptible to infections. But it wasn't that.

Days of nausea and fatigue turned to weeks. And then weeks turned to months. And after every doctor visit and each new medical test, I had no answers. In those months I began to feel sad. Really sad. A heaviness veiled my normally happy disposition. As a counselor, I knew I was experiencing symptoms of depression. But being sick with no answers is inherently depressing, so I figured that was why.

My rheumatologist faithfully searched out the cause of my mystery illness, determined to see me well. Both her instincts and mine told us this was not AS, and likely not rheumatologic. And when blood tests, CT scans, and biopsies came back normal, she tested one more thing. "It's a far-off chance that it's this, and I've never seen it in my entire career, but let's check it anyway," she said.

The day she called with my test results, I was fully expecting to hear the results were, again, normal. The undiagnosed but very sick know that normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help, mean life can get better than the hell you are living. Almost no one understands why getting bad test results is such good news except the determined and courageous patients who have not given up on fighting for answers to the cause of their illnesses. But that day, I got the beginning of an answer.

My doctor informed me that during my cosyntropin stimulation test, my adrenal glands produced virtually no cortisol, which meant that I had Adrenal Insufficiency. In the onslaught of google research that commenced after that I learned that all the things I had been experiencing, including depression, were symptoms. I needed to start steroid therapy to replace the cortisol my body wasn't able to make. Hydocortisone made my life immensely better in the span of about two weeks. But managing my new condition has not entirely stabilized, and we still are determining the cause of my Secondary Adrenal Insufficiency.

Developing an additional condition has meant seeing more doctors, specifically an Endocrinologist, having even more regular blood work, and sucking up the fact that I'm dependent on steroids daily to function. (Really, to live. Without steroids, Adrenal Insufficiency patients can go into life-threatening adrenal crisis.) 

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for  Anchor for the Soul .

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for Anchor for the Soul.

Developing and managing a second disease requires bravery. About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases. (Via Maedica) And that's not counting co-morbid medical conditions outside of autoimmune disease that can occur, like mine. The reality is, many of us have or will develop a second diagnosis. And that diagnosis will bring new challenges and opportunities to process, grieve, and hope for the better life we all want. Six months after learning about my new condition, this is what I have learned:

1. Listen to Your Body. When we are attuned to our bodies, we often can know when something is off physically. Trusting your internal sense that something is off can enable you to be persistent to get the care you need.

2. Value Your Health. The fear of not getting answers and being judged as a complainer or drug-seeker can keep us from pursuing medical care. If you experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor(s). 

3. Let Yourself Grieve. Giving yourself the space to grieve your illnesses is not a pity-party. Even though you are used to being sick, it's a blow to find out that one more thing is wrong with your body. Let yourself cry about it. Talk to a friend. Go back to see your counselor. (That's what I did.) 

Bravely giving ourselves the space to listen to our bodies, value our health and existence, and grieve the assaults to that existence empowers us to find joy in pain, energy in fatigue, and stability in sickness. Whether you have one diagnosis, or two, or five, I hope you'll be brave and value yourself today.

An open letter to the first doctor who invalidated my pain

I met you when I was 20 years old. Scared, worried, and in the worst pain I had ever experienced, I held the tiny seed of hope that doctors would be able to help my pain become past tense. You were just a first year resident on your rheumatology rotation at the University of Michigan hospital, responsible for doing my initial examination before the real rheumatologist came in. I don't know anything about your life, your own experiences with physical pain, or the training you received before you treated me. All I have to judge you by is that visit and how you treated me. 

When you came into the exam room you quickly told me that all of my bloodwork had come back normal with no signs of inflammation. My experience since meeting you has taught me that when medical tests do not readily reveal the source of pain, doctors can be apt to judge one's pain as psychosomatic. But I didn't know that then. I just thought doctors were supposed to help.

You didn't listen when I shared how much pain I was in and what exactly hurt. You just pressed on various points on my body asking if they were tender and shared that you felt I probably had Fibromyalgia. You didn't hear that I was not in muscle pain and that none of the "tender points" felt tender. I can't say what you saw when you looked at me, but it certainly felt like you didn't see me. I don't think you saw the otherwise extremely healthy 20 year old college junior who up until a few weeks beforehand had spent most of her free time rock climbing, running, and playing soccer. I can't say I know what you were thinking about me, but your curtness made me feel like nothing more than an inconvenience. 

But I'm a fighter with a researcher's heart and mind. I had already read countless articles in the weeks I had been sick, searching for answers to my joint pain. I knew Fibromyalgia wasn't it. And I knew you weren't really listening to me. 

But now, 7 years later I want to thank you. Yes, thank you. Your invalidation of my pain helped me begin validating myself. To get help I had to trust my intuition. I had to trust my inner knowledge that something was profoundly wrong in my body, even when you didn't fully believe me. Your trivialization of my pain set me on a trajectory of learning how to honor my body and all of the emotions that surround being sick. Your invalidation taught me that minimizing my pain is not ok. And for that, I am forever grateful. 

Sincerely,

Katie Jo Ramsey

P.S. You were wrong. I have Ankylosing Spondylitis, a disease which often shows up as normal on blood tests. Arthritis Research UK estimates that only 30–40% of people with ankylosing spondylitis have inflammation that can be picked up in a blood test, making it all the more important for patients like me to trust their symptoms and fight to be heard.

Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

This blog was also published at The Mighty, a community of storytellers facing disease, disability, and mental illness together. See it here!