“What do sick people think about? How do you know when you start to be a sick person?”

This statement by author Nina Riggs in her memoir, The Bright Hour, was spoken when she woke up one morning shortly after she was diagnosed with breast cancer. When I read it, it gave me pause. I tried to remember if I had ever had a similar thought and couldn’t locate one anywhere in my memory, although that’s not saying much nowadays.

Based on my own experiences with chronic illness and being a “sick person,” I’m going to attempt to answer these questions, at least based on my own personal experiences.

What do sick people think about?

My first experience as I involuntarily ventured onto the on-ramp of the sick person highway was a hospitalization back in 2014 that, making a long story very short, led to my diagnosis of endometriosis. Not knowing much of anything about the disease at the time, my first thoughts focused on:

• When am I going to get better?

At the time, I didn’t realize that endometriosis is essentially an incurable disease. If you are very lucky and happen to have an excellent excision specialist to surgically remove your endometriosis, it may never come back. It’s been almost three years since my excision surgery with a skilled excisionist and I’ve had no recurrence of endometriosis. I consider myself to be in remission, which will hopefully become permanent. However, I also have a condition called adenomyosis, which is essentially when endometrial tissue grows into the muscular wall of the uterus. Currently, the only way to cure adenomyosis is via a hysterectomy. (And as a PSA: hysterectomy is NOT a cure for endometriosis! As long as the disease persists elsewhere in your body, a hysterectomy will not fix you!) But as I have not yet been blessed with children, a hysterectomy is not an option for me. So when am I going to get better? It’ll be awhile.

• How can my illness be managed?

Assuming we are talking about a “sick person” with a chronic, incurable illness, once it is established that a cure is not an option, discussion moves onto disease management. This can include medication, surgery, lifestyle changes, dietary changes, exercise, etc.

For me, disease management has taken a complicated path over the past five years as the diagnoses have piled up. I not only have endometriosis and adenomyosis to contend with, but other chronic illnesses as well.

• A celiac disease diagnosis necessitates a gluten free diet for life (although there are some promising treatments in the research pipeline!)
• Endometriosis required three surgeries to get everything under control.
• Adenomyosis will require a hysterectomy when I am ready. Until then, pain management is key is helping me maintain a normal level of functionality.
• A brain tumor required medication and then eventually brain surgery when the medication became intolerable.
• An aneurysm in my head required a stent to be placed to prevent rupture and a stroke.
• Dysautonomia, specifically postural orthostatic tachycardia syndrome (POTS) in my case, requires raising the head of my bed 5 degrees, wearing compression stockings, taking in lots of fluid a day as well as 5-7 grams of sodium daily, and adhering to a strict and personalized exercise program. I also recently just started a medication called Florinef (fludrocortisone).

As you can see, the complexity of disease management depends on the extent of disease present.

How do you know when you start to be a sick person?

In my opinion, you are truly a “sick person” when disease management becomes a key focus of your everyday life.

The most challenging of my conditions to deal with right now is POTS. For the past six months since my diagnosis, I’ve been floundering, trying to keep my head above water when it comes to disease management. I made the above-mentioned lifestyle modifications, but it wasn’t until my recent appointment with a POTS specialist that I was started on medication and we now have a decent plan to help manage things.

• I was started on Florinef 0.1 mg once daily for a month or so, and we will decide how to titrate from there. I’m fairly certain I can already tell I will need twice daily dosing, given the fact that I’m still orthostatic by 30-40+ points by heart rate in the mornings.
• I’ve switched over to sexy (not) thigh-high compression stockings that squeeze your legs so hard they give your thighs muffin tops. But actually, they are helping improve my symptoms!
• Exercise. Oh, the exercise. I had my cardiac rehab evaluation recently and was given an exercise program tailored especially for me based on the results of my treadmill test. Basically, I start on a recumbent bike three days a week for 20 minutes and over several months, very gradually work up to an upright cycle and then a treadmill until eventually I’m on the treadmill five days a week for 45 minutes. Eep. Think about how much you exercise and tell me that’s not intense for someone who currently sometimes can barely make it down the driveway to the mailbox and back.

Of course, throughout all this, the hydration and salting still apply. My days revolve around hydration, exercise, and doing other things to manage my symptoms so I can hopefully someday experience an improvement in my symptoms and achieve a better quality of life.

And that, I think, is the essence of being a sick person: doing what you have to do to be able to live your life in a way that is meaningful to you.

Looking at your own life, what do you think about as a “sick person”? When do you think you started to be a “sick person”?

💛ribbonrx