I’m having a good day, so why do I feel so guilty?

I suffer from debilitating chronic pain. Some days are worse than others. At my worst, simply holding my head up feels like too much effort. I have no diagnosis. Most of my pain is believed to have originated from a car collision when I was 16 years old. Though no doctor can tell me why, after 18 years the pain persists. 

The pain is invisible to those around me, including my doctors. Over the years I’ve had to tell my story again and again to each new doctor I see. This has been exacerbated by my decision to move frequently during my 20s. I have not had a family doctor since I was a wee tweeny-bopper. Since then, I’ve bounced around to walk-in clinics and emergency departments whenever my pain has gotten past my ability to cope at home. 

Maybe it’s all in my head?

My story is a long one. This past year, I’ve been compiling my medical records for as far back as I can find, not an easy feat. As I read the records, I’m reminded of all the emergency visits and encounters with doctors. Each visit feels like a race to get out whatever information I can.

The current fee-for-service model in Canada means that I have very little time with each doctor that I see. It also means that I am only allowed to bring up one to two issues per visit. For someone like me with a complex medical history this model makes it impossible for me to give them all of the relevant information in my allotted time. Often that means that each doctor tries to assess me from scratch, a maddening process for me and those like me with complex medical files. 

To add insult to injury, I’m often dismissed by doctors when test results come back negative. “There’s nothing wrong with you”. “You look fine”. Hearing words like this repeatedly from what are supposed to be trusted medical professionals has an impact on you over time. 

For me, it was gaslighting. Maybe I’m not in pain? Maybe it’s all in my head?

As I mentioned earlier, the pain is never consistent. Most recently, I’ve had many more bad days than good. It has become so overbearing that I can hardly use my mental capacity for anything other than coping. I’ve dropped out of volounteer activities, let my gym memberships expire, and am now on an undetermined length of sick leave from work. I even chopped my hair off to have one less thing to have to maintain (I did not cut it myself, I’m not that far gone).

When a good day comes along you would think I’d be ecstatic with joy. Yet, I often find myself in tears over the immense feelings of guilt and shame that come with a break from the pain.

Maybe I’m not really in that much pain? If I feel this good, why aren’t I working?

More than anything, I feel as though I have to justify this feeling. As if I’m not allowed to feel joy or ease or comfort while I’m off sick. I should be at home in misery until I feel well enough, then back to work I must go. 

Of course, most of this is a product of my own imagination. Though, I have to ask myself where it came from. Why do I feel that I must justify feelings of joy? It’s an incredible instinct that I’ve only recently become aware of and which will take some time to break free of. 

Breaking down the defenses

In working with my counsellors, I’m starting to understand a little more about where these default reactions originated. Years of justifying my pain to doctors, supervisors, co-workers, family, and friends. Years of being told there’s nothing wrong with me. Years of gaslighting. I’ve been building up defense mechanisms all this time to prepare me for the mental anguish of being dismissed over and over again.

I believe that I’m getting closer to a state of mind where feelings of joy, ease, and comfort are not immediately followed by guilt, shame, and sadness. It has taken a lot of work to get to this point, but there are still years of instinct to rewire. It hasn’t been easy either. I’ve gone through four counsellors to get me here. I am so thankful for their support.

I’ve also switched to a Nurse Practitioner rather than waiting in the long line of people for a family doctor. That switch was the best possible decision I could have made for myself. Our first visit was an hour long. An hour long! She looked me in the eye. She listened to my story. She even asked follow up questions. Subsequent visits have been between 30 minutes to an hour long, and at times we go over that. I finally feel like my story can be told in its entirety.

Though my test results are still coming back negative, my NP has not dismissed or given up on me. She’s helping me to slowly bring down my defences to help me trust again. And not just in her, but in myself as well. To trust that what I feel is real, good or bad. 

The pain is real, and so is the joy.

When I have a good day, my new goal is to react with self-compassion.

I feel good today. I know this might not last, but I’m so thankful for this break from the pain. Now, let’s have some fun!