Why the question ‘How are you feeling?’ frustrates me as someone with ITP
While well-intended, the question can open an unwanted can of worms
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“How are you feeling?”
Who knew a simple, well-intentioned question could stir up so many emotions? I hear it several times a week, and it always makes my stomach drop and my eyes roll before I can catch myself. Because I know I’ll end up lying.
Many people with chronic or rare illnesses are asked this question regularly, as others often don’t know what else to say. While it generally comes from a good place, hearing it so frequently frustrates me.
Putting a name to my health issues
Let’s go back to 2018. Between owning and running a preschool, being a single mom to two wild boys, and finalizing a divorce, my life was pretty chaotic. The school was in financial trouble, and I was struggling to manage my bipolar disorder.
This led to extreme fatigue and exhaustion. But why wouldn’t I be tired? I had an hour-long commute to work, my boys were young, and I was constantly worried about work and survival. Then, I started developing bruises all over, and my period lasted for more than two weeks.
Feeling awful here and there turned into feeling awful every single day. No matter how much sleep I got, no matter how much water I drank, I felt ill, like I had the flu. After a few weeks of this, I was exhausted physically, mentally, and emotionally.
My annual gynecology appointment was coming up, so I figured I’d mention the abnormal menstrual cycle then. I’d had awful periods since the age of 9, but my doctors had always brushed it off. But feeling this way for weeks on end was too much. And my decline was beginning to show at work.
I was in my office when the labs my gynecologist had ordered came back. She said the results were very concerning and advised me to go to MUSC Health University Medical Center, one of the largest hospitals in South Carolina, where I was living at the time.
“Hey, Ms. Shay, you OK?” one of my employees asked from the doorway. I didn’t even realize I’d laid my head down on my desk and had nodded off. Was I drooling? How embarrassing!
I then rearranged my schedule and made the 90-minute drive to the hospital.
After hours of questions and more blood work, I received a diagnosis that explained all of the issues I’d been having: immune thrombocytopenia (ITP). The rare autoimmune blood disease had caused my immune system to attack my platelets, and my red blood cell and hemoglobin counts were insanely low. It explained the bruising, the exhaustion, and the weeks-long period.
Thankfully, this first flare was a relatively easy fix. After some blood transfusions and two rounds of corticosteroids, I was doing much better. But had my ITP been left untreated, the situation could’ve been much worse.
There’s more to me than how I’m feeling
Now, I have good and bad days. But despite being a superactive working mom before I got sick, I’m now permanently slowed down. I also have lupus, which exacerbates my fatigue, and I regularly experience symptoms of postural orthostatic tachycardia syndrome, as well as blood pressure spikes and dips. And I still bruise frequently, even when I feel well.
My close family members see me suffer. But I always put on a strong face and act like I’m fine. I’ve never wanted to be a negative person. I don’t even cry in front of my children, because I don’t want to worry them.
So when I see someone I haven’t talked to in a while, and they ask the usual question — “How are you feeling?” — I sigh and take a deep breath. Planting a soft smile on my face, I say, “I’m good.” But I’m usually lying. Let’s be real: I don’t feel good or fine. I feel like crap most days. It doesn’t matter how much I sleep; I still wake up tired. But I don’t want to be so negative.
Living with chronic and rare illnesses, I appreciate distractions from the challenges I face every day. I had a life before ITP that included hobbies, activities, dating, gossip, independence, and so on. It’s easy to lose myself in my diseases and medical maintenance, but I’m a whole person; there’s more to me than my health status.
So instead of asking me how I’m feeling, try asking questions about what I’m doing or who I am as a person. It makes a world of difference and can help us better connect with each other and engage more in the conversation.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
