Questioning if I'm 'Sick Enough' as Someone With Chronic Illness

I live with rare neurological condition called acute hepatic porphyria and the fight I have with my body is constant. I don’t ever think I’m sick enough. I will actively choose not to seek medical help, even when I am in the throes of a life-threatening attack.

I imagine this idea of minimizing severe symptoms when you have a chronic condition like porphyria is not uncommon, although I’ve yet to meet another person in my community with the struggle. Why is no one talking about this?

Let’s back up and talk a little about this rare disease. Acute hepatic porphyria is an inherited metabolic disorder caused by a missing enzyme in the liver’s heme biosynthesis pathway; it affects approximately one out of 100,000 people in the United States. The majority who live with the genetic mutation seem to function just fine despite limited heme production. For others, like me, symptoms occur when environmental triggers like certain medications, diet, stress and hormones overwhelm the liver’s production of heme and damaging neurotoxins overflow throughout the body.

Attacks look a little different for everyone, but for me they generally start with extreme and unspecified anxiety, constipation and abdominal distention. When the diffuse pain starts in my abdomen, it’s unreal, debilitating and all consuming. I get these attacks twice a month and more often than not, my symptoms don’t progress further than the extreme pain.

When I categorize an attack as “severe,” it means I’m experiencing paralysis, muscle weakness preventing me from walking and uncontrollable vomiting. At this point, I need to be hospitalized and treated to prevent dehydration, monitor my metabolic numbers and receive treatments, including IV pain meds. Time and again, when I am in a severe crisis I seem to be unable to recognize and acknowledge the severity of my symptoms. I will simply stay home in bed for days doing nothing but trying to survive. This is of particular concern because untreated hepatic porphyria can cause irreversible nerve damage.

In a severe porphyria attack, I will continue to push through despite how much my quality of life is impacted. The moment I think about requesting hospital admittance, I feel like an imposter, like the symptoms of my porphyria are not yet to a point I have deemed “crisis-level” and worthy of outside attention. It doesn’t help that porphyria is largely an invisible illness, so I am constantly reminded about how “well” I look from well-meaning family members and even my nursing team. If I look good to others, how bad can an attack really be? I think many chronic pain patients would agree that wearing pain looks different once you get accustomed to enduring it in large doses.

My brain decides again and again to minimize my symptoms, that I am not sick enough to warrant action. Then once my attack is over, I’ll look at my fiancé and say something like: “Dang, I really should’ve been in the hospital for that one. Next time I have [fill in the blank symptoms] I will definitely go.” A version of this conversation occurs after every severe attack. And while he’ll continue to call me out on it, I can’t quite seem to learn from my mistakes.

Where does this damaging behavior come from? I can trace its origins to several influences and experiences growing up. From a young age, the behavior of pushing through while ill was modeled to me. Women who were not giving their bodies a break and going to work sick surrounded me, in the media, at school, even in my own home.

Also, when I consider specialists misdiagnosing my rare disease and dismissing my pain as being “in my head” or a supreme manifestation of mental illness for nearly two decades, I can see why I developed a complex. I can see why I get stuck on this belief that the pain my body endures is not a big deal, at least not one that necessitates medical intervention. Before diagnosis, minimizing my symptoms was how I survived.

But there’s more to it than that. In our ableist society, people may feel if they dismiss their needs they will be rewarded. Not to mention that illness is seen as a weakness, something to be hidden, and many people don’t consider that disabilities can be invisible. Badges of honor are bestowed on those who push through despite their pain, because the image we portray becomes more important than how we truly feel.

How would I act if I was not concerned about the judgments of others and instead was true to myself? If imposter syndrome is about image rather than courage, how would it look if I acted courageously?

• Acting courageously, I own and do not minimize my symptoms.
• Acting courageously, I demand a better quality of life.
• Acting courageously, I am not accepting of my suffering when there is a solution at my disposal.
• Acting courageously, I do not accept doctors dismissing me.
• Acting courageously, I do not let my body get weak from nerve damage and dehydrated from vomiting before seeking help.

If this idea of not being sick enough does, as I suspect, run rampant in the rare disease community, not enough people talk about it. In my opinion, that’s a problem. When I choose to dismiss my voice of self-compassion, I choose to deny my truth over trusting my body. I choose illness over wellness. I choose to live in fear, and fear is a supreme liar.

Are you a chronic illness warrior with tendencies towards imposter syndrome? Comment below and consider sharing your story on social using #MoreThanPorphyria. Let’s continue to make it OK to talk about mental illness and pain denial in the rare disease community!