Since 2012, my health has been in a downward spiral. And really, if I start at the absolute beginning, it was in 2009, when I had mono. When I talk to my medical team, I always refer to this as the beginning, because I haven’t felt 100% since then.
One November night in 2012, in my first apartment after college graduation, I woke up with horrible pain and pressure in my abdomen. I was shaking – or shivering – and I spent the night on the bathroom floor next to the baseboard heater trying to keep warm and wishing I could throw up and feel better. My job at the time was pretty unforgiving with only a few sick days for the year and no one to fill in for me if I was absent. I went to work and suffered through the next couple of days until the weekend.
I slept all the time, which I attributed to a busy and stressful job. I thought if I exercised more, I’d have more energy. That’s what they say, right? I started and finished the P90X program but developed a hernia in the process, and it still didn’t solve my fatigue problem. Lunch breaks were designated for naps in my car in the parking lot. My fairly active routine deteriorated into survival mode.
And then there was anxiety. Lots of it, building up and piling on until I had moments when leaving the house for anything but work could send me into tears. I hated eating out – I still kind of do – because I never know when my stomach pain and digestive issues will appear in a fury. I didn’t want to fly with my husband, a pilot, because I knew I’d be trapped in an airborne tin can and it would be many minutes before I could get relief if I needed it. I still feel that way. I am convinced anxiety is the one of the toughest enemies.
I saw my nurse practitioner shortly after we got married because I thought I was depressed. I told her about my sleeping, my apathy, my inability to feel anything except irritation and anxiety. She asked if it was interfering with my ability to function normally. In that moment, I dismissed it all, because I was still going to work, still eating, still sleeping. I wasn’t sick. I had months where I felt better than others, so it had to be my fault when I felt sicker. And she didn’t know how to help me. She ordered a blood draw that day, but they lost either my blood or my results, and no one ever admitted to me that they needed to test again. I may have had an ITP diagnosis in 2013. I could have been in treatment that much sooner.
Last year, when finally I was diagnosed, I felt so much relief. Fear, yes, but more relief. Because I didn’t have to pretend I was feeling okay anymore. I didn’t have to listen to people dismiss my symptoms. It wasn’t all made up in my head. I didn’t have to “just suck it up and deal with it.”
Often the initial reaction [to a diagnosis] is one of relief; you may feel grateful to know the cause of previously unexplained symptoms. This is especially true with an autoimmune diagnosis, since the disease may have been progressing for years with confusing periods of illness and remission that are often dismissed by family, friends, and even physicians. A diagnosis can offer you much-needed validation. It is not uncommon for your relief to quickly fade, though…
From The Autoimmune Wellness Handbook by Mickey Trescott, NTP and Angie Alt, NTC, CHC
Relief lasted a long time – four or five months, maybe. But then there was grief. In the past year I’ve been in all five stages of it, not necessarily in linear order.
I have felt guilty for grieving after my diagnosis. I mean, I was grieving, in some form, a loss of my own life. This is not to discount other forms of grief and loss. It’s just to acknowledge what a diagnosis can do to a person. Deconstruction starts. You realize you can no longer live life the same way again. Priorities change. Life seems a little shorter, more urgent, more uncertain. When everyone else has a myriad of choices, you may only have a few. The current takes you where it’s going, and you grieve over loss of choice, loss of relationships, loss of a time when health didn’t dictate your days.
Grief isn’t like a round of antibiotics. You don’t cycle through it once and problem solved. Grief is like an autoimmune disease. Good days come unexpectedly. You enjoy them and try not to focus on the loss. Bad days immobilize. No one knows a cure. Remission. Relapse. Remission. Relapse. Your body doesn’t care when – whether it’s Christmas or you’re on vacation or you have an important meeting.
I have no control. No medicine to make it better. I just let the current take me, live with purpose, and wait for a better day.
And I want to note – no one knows if there is a connection between anxiety and digestive symptoms and my one autoimmune diagnosis. From my research, it looks like many autoimmune patients eventually receive diagnoses of multiple autoimmune diseases. Maybe we’re headed in that direction. I’m not sure. The trouble is our healthcare system isn’t really that great at tackling autoimmune disease and chronic illness. It likes the patients it can treat and kick out. But I’ll talk about that in a future post.