3 Tips for Coping with a Secondary Diagnosis
August 4, 2016 | Posted in: chronic illness; support
This past fall I felt sicker than I have ever been in my life. Fatigue covered my days like a 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 to 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 (AS). 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 I’m in a flare-up of my disease. It’s that simple. When something new hurts — like my eye — I figure AS can do 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 make me very susceptible to infections. But that wasn’t it.
Days of nausea and fatigue turned to weeks. And then weeks turned to months. After every doctor visit and 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 and was determined to see me well. Both her instincts and mine told us this wasn’t AS and likely not rheumatologic. When the 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 normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help and 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 haven’t 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 I had adrenal insufficiency (AI) . The onslaught of Google research commenced after I learned 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 hasn’t been entirely stabilized, and we’re still 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.)
Developing and managing a second disease requires bravery. “About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases,” according to Maedica. And that diagnosis will bring new challenges and opportunities to process, grieve and hope for the better life we all want. Six months after finding out about my new condition, this is what I’ve learned:
1. Listen to your body.
When we are attuned to our bodies, we often 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 are experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor.
3. Let yourself grieve.
Giving yourself the space to grieve your illnesses isn’t a pity party. Even though you’re 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.)
Katie Says: I am a lover of truth and beauty and a resolute seeker of joy. Wife, counseling masters student, writer, passionate reader (truthfully, a nerd), and friend. Ankylosing Spondylitis (AS) has been a constant houseguest in my life since early 2009–one I’d love to kick out but for the life of me can’t! Having a severe autoimmune disease has impacted every part of my life–in many ways that I hate. But suffering has also carved out space in my soul to relish the beauty in life, extend peace to others, and–ultimately–to more fully rest in the love of the God who lives. Carving can be painful but the space and contours it creates are beautiful. Join in my wrestling and resting in God in my experience of physical suffering at http://www.anchorforthesoul.net