Facing Physical Illness as a Mental Health Writer

I am a mental health writer. I’ve blogged about my experiences with OCD and depression for over six years. I’ve published countless articles and essays across The Mighty and other sites. And I like to even think I’ve built up somewhat of a following. Writing about mental health is what I know, and you’re supposed to “write about what you know,” right?

Yet now this mental health writer is faced with physical illness, and I don’t know what to write. In the past year, I was diagnosed with polycystic ovarian syndrome (PCOS) after my periods suddenly became irregular. More recently, in the past few months, I started experiencing extreme thirst and other symptoms of diabetes. I failed a glucose tolerance test and was diagnosed with type 2 diabetes last week. And now, my doctors are wondering if both of these are caused by Cushing’s disease, which is potentially a tumor on the pituitary gland. I just turned in my 24-hour sample of urine to measure my cortisol level.

I feel unhinged. I had just gotten so good at managing my mental health. I knew how to find a therapist if I needed to go back. I was on medication that worked well for me. And I was good at explaining my medical history to doctors. I was actually enjoying just living for a while and not spending all my time focused on getting by. And then, my hormones went haywire.

Now I have to learn what feels like a whole new skill set. I have to again practice advocating with medical professionals and being assertive when communicating symptoms. I have to make phone calls and get blood drawn, two things I hate. I am also struggling to trust that I know my body and have an intuition about these physical symptoms. Because I have anxiety, sometimes I think I am dying, and sometimes I think that I am making it all up. Thankfully, my doctors seem to believe me and my symptoms, but I worry that if the tests show a normal result, will they see my symptoms as irrelevant?

Everything is moving slowly, but also so fast. I check my email all day because test results come in slowly. Yet, once they are in, orders for new labs come fast. Some symptoms appear slowly, like the weight gain I only noticed when summer arrived and shorts no longer fit. Others, like extreme thirst or dizziness, come on fast after a meal and linger.

I want answers, but I know I have to be patient. I can’t make any of this diagnostic process go faster. My doctors and I are doing the best we can. Yet, all the while my body seems to continue wreaking havoc on itself. There is so much uncertainty.

With mental health, writing was always what kept me grounded. It is how I process the thoughts and emotions swirling inside me. How do I process physical symptoms when all they do is make me feel separate from my body or out of control of my body? I don’t even feel like I am allowed to write since I don’t have a concrete diagnosis and am not recovered, whatever that means. How can I write about the process when I don’t even know the target?

What I need to remember though is looking back on all my mental health writing, it can seem like I walked a straight path. Because I am far in recovery, it’s easy to forget all of the struggle and pain and uncertainty from those mental illnesses too. I wasn’t diagnosed with OCD until over 10 years after the onset of symptoms, I was hospitalized multiple times for depression, and graduating college was an immense undertaking. I can’t let myself forget that none of that was easy just because recovery now tastes sweet.

It really is the same with physical illness. I believe I will eventually get a diagnosis, as best as my team can find. I will eventually start some sort of treatment. I will get through this, and I will look back on this from the other side.