Validation of Pain Is the Start of Treatment
In our society, only older people are allowed to have pain, like my 87-year-old grandma who calls it “The Netflix” and wears silk scarves around her neck.
It’s not normal to have chronic pain when you are 18-years-old, an active and athletic cheerleader, and a class officer of your graduating class. At least, you aren’t allowed to have pain that you talk about openly.
There’s no validation available for those types of experiences, unfortunately. It’s not at all what’s expected of you so it just doesn’t exist, forced into darkness. My pain was just that - something I lived with but was reluctant to share about because even back then I sensed it was too taboo.
No-name chronic pain game
For almost a decade, I had some sort of mystery, no-named chronic pain. The joint pain and aches came and went as my genetic lung disease, cystic fibrosis (CF), waxed and waned through periods of stability to episodes of exacerbation.
My previous doctors were aware I had pain, but neither of us made a big enough deal about it to investigate its source or possible treatment. At the time, there were no highly effective treatments for CF. And so, all of our attention was focused on keeping my lungs healthy and the joint pain was glossed over as a result - not out of malice or neglect, but out of necessity.
The straw that broke the camel’s back
When I gave birth to my son, the camel's back collapsed as I sat crying in my current CF doctor’s office admitting I needed “something more” to get through the days caring for our infant. At the time, I had no idea postpartum flare-ups were a common occurrence in rheumatoid arthritis (RA).
I was left unvalidated
The rheumatologist I visited a month ago had no answers or explanation and waved me off, saying that he couldn’t treat me without a diagnosis. My experiences were once again left unvalidated by someone who, this time, treated joint pain for a living.
I felt shame and guilt as a new mom asking for medications that I was scared to take in the first place. Even more so, I felt a burn of desperation that if I didn’t speak up now, I would be trapped in a terrible, sunken pit forever unable to escape. My quality of life was as low as I felt at that moment. That day, one fear won over the other, and I spoke out.
Validation is the start of treatment
As I explained my symptoms and how hard it’s been to my CF doctor, I felt like at any given second, the sheet could be pulled out from under me. I would be labeled a liar, crazy, a “drug-seeker”, etc., all the terrible things people in pain have been called time and time again before me. I wasn’t sure I believed in the subjective pain that plagued my life - I was doubtful and fragile - so how could she?
Instead, she looked at me with a mix of warmth and sadness and said, “I believe you are in this much pain, Janeil. I can see it in your face and I know how tough you are. I am so sorry it’s gotten this far. It’s my job to make sure you never feel this way again when we can treat it. Now, let's get you some meds to make you more comfortable and focus on finding answers to why you’re in pain, together.”
The start of healing
And with that, my world opened up again. A ladder was thrown into the pit and a hand appeared at the top beckoning me to grab on and be helped up.
Validation is the start of treatment for so many people who have felt alone and scared in their pain. It’s the start of healing. I knew I would be okay eventually because there was someone who simply looked at my pain and witnessed me.
Have you reclaimed what RA has tried to take away?