Where does it hurt?
Credit: Jae Walker

There is a dark place where pain takes me that I will not talk to my doctor about. Not even my rheumatologist knows about this deep, intense, raw place. I have more than 11 years of 24/7 chronic pain from multiple chronic illnesses. I deal with doctors who do not have chronic pain themselves. They do not understand a four-day flare that doesn’t allow you to get out of bed. I even have doctors who treat me like a puzzle and not a person with needs and constant pain all over their body.

My dark place is not a place for the weak. It’s not a place for the unmerciful or judgmental. It’s not a place for folks without empathy or kindness. I have spoken about this place to very few people, but I know I’m not alone in traveling down this path. It can create alarm bells and panic if described incorrectly.

My Secret Location

I have this ache inside me for nothingness. I want oblivion. Pain makes me yearn for it. Do not misunderstand me, I do not mean death and I do not mean suicide. I mean quiet darkness. The absence of pain. I want emptiness, coldness. I want a still mind, a heart that does not weigh my body down so much I’m afraid it will crack the floor and I will fall through. But I do not tell doctors about the dark place my pain can take me. I do not talk about what it feels like when the pain is unmerciful, and it seems like it will not release my body.

My mind goes to the secret raw location for release. The place I do not talk to most friends about. The place I do not even talk to most patients about. When my body gets lost in the fog of pain, of the struggle to walk across the room, I yearn for the nothingness. I ache for oblivion when my brain gets overworked with the calculations of deciding what I’m able to do today and how much pain and energy it will drain from my batteries.

I do not want to wake up stiff and sore, unable to move quickly or easily. I am tired of my body bearing the resemblance of a non-disabled person while my insides continue to churn, split, and implode. I am that 80-year-old person who looks like a 30-something but still needs help walking across the room sometimes.

I am tired of being confined to my bed due to sharp shooting pain in my hips. I am overwhelmed with migraine controlling my ability to see straight or tolerate sound of any kind. I do not want my neck to ache or my head to feel like it was split open by a sledgehammer while I try to barely function. Where do I put the knots and tension in my back? How do I ease the nerve pain that gets triggered all over my body when I happen to scratch my skin too hard because the adhesive from my port is bothering me?

I want a break. A stop. A chance to rest and recover. I want a moment to catch my breath so I can get back up and fight again. Maybe I could stand stronger, and I could laugh a little easier. Perhaps I could forget about the location of my body in space, how my clothes are touching my skin, what parts of me are touching furniture and how all that contact is causing pain. Or I could hop up at the last minute and go for a hike, just grabbing a water bottle and a few supplies without worrying about pain meds, whether it would trigger a flare, or if I would fall when I get too tired. If my body got the chance to rest and not work so hard maybe it could be studied by science, or maybe I could exercise again on a regular basis without doing damage or ending up in an unbelievable amount of pain. I could be in a healthier place physically.

But I get no mercy.

Rating the Unbearable

When my in-home nurse comes for my IVIG infusion she inevitably asks me what my pain levels are and where it hurts. I involuntarily laugh. How the hell do I quantify that? How do I explain what that is like? Then I get asked to focus on what hurts the most. I try to zero in on the loudest ache; and my focus makes me aware of even more pain in my body, so my list becomes longer as I pay closer attention.

I am extremely literal, so I start with the most painful spot and go from there. I always get cut off because the list is too long. Next comes the number. I don’t want to give the number. Which pain do I choose? Which condition do I choose? What is my focus? And how do I explain that my body numbs pain until it hits a certain point because otherwise it would be too much for me to function?

Every doctor’s office also wants me to rate my pain, but my pain tolerance has gone up over the years. My first diagnoses were moderate to severe rheumatoid arthritis and fibromyalgia in 2011. It took more than two years to find a biologic that helped me. I was running on fumes and steroids just to barely function while my body was swelling, flaring, and on a regimen of NSAIDs every four hours to help with daily inflammation.

I have added diagnosis after diagnosis over the years, including several other autoimmune diseases. Now I have small fiber polyneuropathy that is progressive and a rare complication of both rheumatoid arthritis and lupus. I thought I knew pain from my RA flares, but nothing compares to this nerve pain that spreads throughout my body from head to toe. It is unyieldingly cruel.

A Plea for Mercy

I have a pain management doctor. For a long time, I did not tell her that I crave (no dream about) an empty space where I no longer hurt. When I told her, I did not go into details. I did not tell her the extent of my desire. But she understood because she has fibromyalgia. Not everyone understands this longing for the blankness — where I no longer hurt, where there is no more ache in the morning, and I no longer struggle to shower. People might think that I want to hurt myself or commit suicide. I know I have anxiety. I know I have depression. But I don’t want death; I just want mercy.

Mercy is why I talk to my therapist when I feel this way. Because I do feel sad. This is always a cycle for me. I know I am resilient. I have people around me who constantly remind me of that, and who support and love me. But I just need to feel sad because it’s hard. I do not have relief. I do not have that darkness, empty coldness, that relief. That is my truth; that is my reality. I cannot escape my body.

I just need a moment so I can pick myself back up and keep going.

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

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