What’s in a name?

A new member of my staff was struggling with health issues in late 2020 that was causing her to miss work. She was also new to town so I offered to help her get to and from the hospital for visits and emergencies, not wanting her to go through the all too familiar ordeal by herself. She eventually needed help feeding her cats once a day while she was laid up in hospital. On one evening, we were chatting on the phone, her in the hospital, me on route to her place for a feeding, when she confessed how desperate she was for a diagnosis. She needed to know what was wrong with her and why she was in so much pain.

I couldn’t have agreed with her more. We laughed about how silly it sounded that we wanted a doctor to tell us we had something wrong with us. Anything! But not too bad, something we could heal from, you know? Comedian Marc Maron said it really well in his 2017 stand up special “Too Real” when he said:

“You know when you go to the doctor you kinda want something to be wrong with you, like not a major thing, but enough to not make you a fucking lunatic.”

Marc Maron, Too Real, 2017

A few days after that conversation, I got a call saying that she had succumbed to her illness, whatever it was, alone, at the hospital. The cause of death was a clot in her lung, but what led to that point was inconclusive.

A level of fear, worry, and frustration

Not having a name also adds a level of fear to my life that I’ve had a hard time managing. Like that staff member who died of unknown causes, I have this underlying fear that we’re missing something important as to why I’m feeling this way. We had many similarities between us that made the connection between the lead up to her death and some of my past experiences uncomfortably familiar. We even matched demographics; similar age, family type, work history, and most importantly, humour. Perhaps an instance of survival guilt, why her and not me?

There’s also this worry that being nameless will mean that I may have no justification for disability support. Am I a crack in the system? What if they won’t give me support for just “being in pain”.

Family, friends, colleagues, and acquaintances have all put in their thoughts and opinions into what they think is my issue.

“You know what that is, that sounds like what my cousin has…”

“You definitely have…”

“Have you ever been tested for…”

It can get frustrating at times, being told by many different people that you definitely have this or that. Especially when I’ve been tested multiple times for the same condition by different doctors, and been told repeatedly that my results are negative. I know people mean well, they want me to find answers sometimes as much as I do. The frustration comes in when a few get almost defensive when I say that I don’t have this or that. It’s hard enough for me to build trust with my doctor, so having someone argue with me about my unknown condition erodes my trust further, which doesn’t help me move forward.

Make it real

There is a certain satisfaction in naming something. Even something as small as finding the word for something that you’re blanking on, like winning a round of the game Taboo.

“You know, the thing! The stretchy, kind of sticky, circle thing that we use to wrap stuff? You know what I mean!”

“An elastic?”

“Yes! Pass me the elastic. Please.”

Giving something a name makes it real, makes it tangible. I’ve found this concept to be especially true, and helpful, when learning to understand my feelings. As soon as I can say, oh, this is fear, it makes the feeling real. It allows me to feel it more fully. Once I’ve named it, it’s no longer a mystery the next time the feeling comes up and I can accept it a little easier for what it is, then move on.

Sense of control

I can’t help but feel angry about not having one. For not having a reason for the way I feel. When someone sees me walking with my (classy) cane or notices my absence from my regular activities and asks me, “what do you have, anyways?”, I want to be able to answer, “I have THIS”. Right now, I just have this annoyingly long way of explaining that I’m just in pain. I have this weird sense of jealousy for those that can say, “I have this and here’s what I’m doing about it.” I imagine that they have a greater sense of control over their lives. At least, that’s the story I tell myself.

I’ve been trying to name my “condition” for as long as I’ve been aware that there was something not quite right with my body. As soon as I realized that the intensity and duration of pain I was feeling wasn’t aligning with the cause of the pain. For example, being unable to put any pressure on my right ankle after walking around the yard, or the block, or the mall. The sharp, stabbing pain feels more akin to a broken bone, not fatigue from a short walk.

I’ve started wondering, with the fear nudging me on, whether something bigger is at play. Maybe it’s all connected? Maybe we’re missing something?

Ending the piecemeal approach

Getting to a name requires support from your primary care practitioner. Because I moved around a lot, I didn’t get an opportunity to investigate my issues holistically. It was more like a piecemeal approach, each physician wanting to address one limb or one organ at a time. Even though I felt I had more than 1-2 issues to discuss at each visit, I sort of had to pick the worst one or the loudest one of the day. I suppose, in retrospect, I had one big issue; I’m in pain and I don’t know why, but I’ve never thought of them as connected until recently. Imagine if I could walk into a doctors office and give them the full list of complaints:

Stiff spine, pinching in the hip creases, excruciating pain in right upper abdomen when laying on the left side, stiff ankle with randomly occurring sharp pains, trouble breathing through the nose, stabbing feeling behind left shoulder blade, sore neck, heavy head, sharp pain in gums near right nostril, nodules on knuckles that are painful to touch, vivid nightmares, numbness in the knees and left thigh, sharp pain in coccyx that pulsates down left leg, sharp pains in left shin, tension in low back and neck with expression of big emotions, […]

No doctor wants to hear all of that. None that I have seen. “Which one is worse, we’ll start on that one.”

Now that I have a primary care practitioner, a Nurse Practitioner (NP), I’m working with her to create a full picture. It means putting myself through a lot of tests, seeing specialists, and filling out questionnaires. It’s exhausting trying to find answers, but I’m not ready to give up yet.

Defaulted to fibromyalgia

(Un)fortunately, the results have continued to come back ‘negative’, ‘unremarkable’, ‘nothing to report’.

Being told “everything looks great” is sometimes such a let down to hear. Is it weird that I want something to be wrong with me? For each test and scan that I’m sent to, I’m always sort of hoping for a positive result. If at least to give me something to fill the gaps in my brain, close the case, end the investigation.

My NP and I recently completed a questionnaire for my application to a pain clinic. It was an assessment for fibromyalgia. According to the questionnaire, I fit the criteria, which essentially means I can be “diagnosed” with that name. Fibromyalgia essentially means that I have pain throughout the majority of my body that presents inconsistently (ie. it moves around and does not have a specific source or cause). It was explained to me that it is often used as a catch all by many doctors when they don’t know what else you have. It doesn’t really change anything because there’s no treatment or cure, but I suppose it is a name.

So why am I not more relieved? Why does it still feel like I’m not finished with my investigation? I suppose the “diagnosis” doesn’t resonate with me. Fibromyalgia just doesn’t fit into the puzzle that I’ve created in my mind. It doesn’t really answer any of my questions as to why I feel this way.

Creating my own name

I honestly think I’m driving myself crazy trying to figure this out. I know it’s not healthy. This process of naming is essentially challenging my ability to accept my current state of being. I’m being forced to face an unpleasant reality that I may never know specifically what’s going on in my body.

I think the likely explanation is that a multitude of small things have compounded over the years. There is no one answer as to why I’m feeling this way. A single name may not have the desired effect I’m hoping for, but I still feel like I want one. If only to help separate myself from the pain. To help detach it from my identity in a way.

But maybe…just for fun, I’ll create my own name. Something that I can use when I need to refer to the pain I’m feeling. Like ‘Carl’.

“I have Carl”, “Carl is acting up again”. No, that doesn’t sound right. Gerald? Carmen? Spaghetti Chaos?

I’ve never been great at naming things. I may need some help. Do you have any suggestions? Write out a name in the comments section or send me an email using the Contact form.