Why I've Decided Honesty About Symptoms Is Not Negativity

I’m trying.

• What is Ehlers-Danlos Syndrome?
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I can promise you that much.

I told myself I’d stop almost two months ago now, but I had no idea how hard this was going to be. I’m fed up with self-sabotaging, yet I keep doing the same thing over and over. The song “Sick of It” by Skillet keeps running through my head:

“Are you sick of it?
Raise your hands,
Get rid of it,
While there’s a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands.”

Every time I hear that song, I feel like it’s speaking about my life. I’m sick of a lot of things, and one of them is downplaying my symptoms.

Just recently, I had a friend actually say, “I’m sorry you’re in so much pain.”

Someone actually said that to me! She cared. I should’ve been comforted by the fact.

Instead, I replied, “Nah, it’s good.”

What? How could I say something so dismissive and untrue? The words slipped out of my mouth before I realized what I’d said.

The more I thought about it, the more I realized. When people care, I want to push them away, because I’m afraid that somehow, some way, talking any about my health will cause them to hate me. That if I go into detail and am honest about how terrible I feel, they’ll think I’m trying to make it all about me. That I’m trying to dominate the conversation or make myself the center of attention. I’m afraid they’ll think I’m using my health as a tool to garner pity.

I don’t think I can handle one more person calling me an attention-seeker right now.

So I downplay it.

Again.

Then I wonder why people don’t realize how bad my health is. I’m not giving them a chance. Granted, I don’t think 90 percent of them would understand anyway, but I’m pushing away the 10 percent that would. There are people I should be honest with, and I’m not.

This includes doctors. I shut down, fighting panic. I shut up, staying quiet. Then, after being invalidated yet again, I shut myself away and refuse to see another doctor until I can handle it. My mom and I used to call it “doctor vacations,” whenever we were forced to give up on finding a diagnosis for a couple months. The emotional toll of searching for the cause of pain for years is something that is hard to understand unless you’ve been through it. It’s hard to break the pattern. That’s how I’ve survived, after all. If you shut down, it doesn’t hurt as bad when people smear your name and treat you like dirt. However, it’s also no way to live.

I don’t know who originally said this, but it is something I need to pound into my brain:

“Honesty about symptoms is not negativity.”

There’s this crushing pressure to be positive, to be strong, even to be an inspiration…We all have different roles to fulfill. Examples being: Mother, father, daughter, son, student, employee, etc. When the role of being a patient becomes a larger and larger piece of your life, it becomes more difficult (or even impossible) to fulfill the other roles. This is what’s known as role conflict in sociology. Sometimes you have to choose between different roles, either protecting your health and not being the family member you’re expected to be (being a patient first) or prioritizing family at the expense of your health (family role first). Either way, it feels like you’re constantly losing. This is something that doctors, let alone people outside the medical community, rarely understand. You can’t fulfill all the roles you’re “supposed to” when you’re chronically ill, which is part of what can make it so depressing at times.

On top of this, justified frustration that stems from being mistreated and isolated is labeled as “over-reactive.” When I’d cry in a doctor’s office, the appointment always went sideways. On one particular occasion, the tears started flowing, and the doctor asked, “Have you seen anyone about your mood?” The emotions that come naturally with chronic pain are seen as proof of “craziness,” proof of “over-reactivity,” evidence of a “hormonal female,” or proof of an “attention-seeker.” In reality, having emotions is human. I think it’s just part of life when it comes to navigating chronic illness.

Sometimes, I feel like I wasn’t allowed to be human. I was supposed to take this all in stride. Even dogs yelp when they’re hurt bad enough. Why do we expect humans to shove it all down deep inside and plaster on a smile? Why do we look at emotions as the enemy? As proof of “insanity?” They’re neither. They’re just emotions. Sometimes they hurt, but they’ll never heal if you never let yourself experience them.

I think it’d be more of a concern if you didn’t grieve your chronic illness for a time. Shoving it down is a bad idea. Trust me, I know, because I’m an expert at bottling up my emotions until they explode. It always backfires. With the stress chronic illness puts on me, it’s really not fair to expect myself to have superhuman strength and an emotionless outlook. We’re human. We grieve. We get help. We pick up the pieces. We go at it again.

Yes, I’m still downplaying my symptoms.

I’m not proud of the fact.

I can’t “fix” all these conflicting emotions and thoughts inside of me with the push of a button – no matter how nice that’d be. I want my heart to know just as much as my head that honesty about symptoms is not negativity. I’m so hard on myself; I feel like I should’ve figured this all out right now. I have to remind myself that can’t heal overnight.

What I can do is keep trying, keep living, and keep breathing.

That’s all any of us can do, really.

Getty Image by Maria Dorota