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Tackling Stigma: Part 2, Broken.

Updated: Mar 27, 2021

Traumatic car accident.

Losing a friend.

Fractured C4, T7-T11.

Fractured humerus, ulna and fingers.

Age 21.

I asked a few questions. She answered.

Finding people that she could relate to was something that really helped her. By sharing some of her responses she is hoping to do the same for others.

Here is a small portion of her lens.

After finding out there was a 2 year waiting list at the pain clinic, what were your thoughts? I mean now what? I felt very discouraged and went on a determined hunt to figure out how I could help myself. I started with a lot of acupuncture and eating properly, trying to sleep as best as I could. Trying to just keep my spirits up, I was always looking at alternative ways to feel better. I also took pain medication and would try to escape in any way possible.. It was a dark time when I felt as if no one could help me, or that the help was so far away.

How long did it take for someone to address the emotional aspect of your physical pain? Did the concept of nervous system hypersensitivity ever come up? It took about 3 years before someone to finally say that we should address the emotional aspect of my issues. There was a definite connection to feeling sad and upset about the accident and losing my friend and my loss of quality of life, and then the pain would get worse.

How did it feel when you had to prove yourself to the doctors? Or prove to the insurance companies? It made me feel crazy, it made me feel like a fraud and I ended up feeling a lot of guilt for not being able to get better. I would feel shame to have to go see so many doctors and basically be made to feel as though I was unfixable, lazy, worthless.

Did it ever come to your attention that having to prove your pain only made things worse?

Yes - having to convince someone that I was in pain gave me insane anxiety and insecurities (at such a young age) and in turn that would make the pain worse because of stress and insomnia. Back then though, I never made the connection between the shame I was made to feel about the pain and the actual pain itself. But looking back I can see that it was a really bad cycle. It really messed up my confidence and my trust within myself.

Did you ever feel that you were crazy, that there was something seriously wrong with you for feeling pain? Yes I was always made to feel as though it was all in my head. They told me if I could just have bigger goals and was to sit up straighter then I would forget about my back pain and it wouldn’t be so bad. I finished university and gave my goals everything I had but I still had the pain, and as a result insomnia. The insurance company in particular made me feel as though I was crazy and lying because all of the scans came back saying that everything was healed so therefore there should not be any more pain. I felt so isolated because I was so young and I didn't know anyone else dealing with that kind of thing. I was fighting for basic rights to healthcare with a lawyer who was an angel - and they would find any way to try and tear me down and tell me I was lying.

There is so much stigma around people with chronic pain just being lazy or taking advantage of the system. And I mean, those people do exist, but how did it feel when you were being compared to them? It felt utterly insulting and ultimately as if I was being called a liar and a lazy leach. I ended up feeling as though I was lying about my difficulties and eventually down played them to everyone. I would lie to make it look like I was normal, I just wanted to fit in with my peers at that age and I felt a lot of shame. To take advantage of the system would be to thrive in life and do it for free - but I was barely getting the medical attention I needed and had to continue to pay for treatments out of my pocket. The insurance company is exactly that - a company - and It does not have our best interests as a society at heart. I was just treated like a number and not an individual who had suffered a life altering accident. It was so discouraging.

In your opinion, how did the downward cycle begin and what did this negative spiral look like? It was when I started to feel as though people had stopped supporting me - the doctors couldn’t help and the insurance company called me a liar - that I wanted to give up on myself. There were so many times when I would have pain and just want to go out and do something with my friends like a normal 21 year old and couldn’t. It would make me sad and in turn cause more stress and pain. Mental health has a large role in chronic pain. The support I needed wasn’t there from the medical community.

You had full range of motion, you could go shopping, you even went travelling. I mean why can’t you work? I would have good days and on the good days I would end up doing everything in my power to feel normal and not bed ridden. On the bad days though, I couldn’t leave bed. So it was hard to find an employer who would accommodate such unpredictability. It was also hard to find something in my field that could let me work only three hours a day (which is what my doctors said would be ok to do).

What was, and has been the most helpful along your journey? Yoga, talk therapy, walking, acupuncture, massage, meditation, finding people to relate to, friendship and community and my dog :)

As humans we are all different and have different capabilities to heal. Mine just took a really long time. I’m convinced they were just eager to slap a label on what I had to deal with, give me a pain medication and send me on my way to the next doctor. If they couldn’t help me, they would get frustrated and it felt as though they would give up on me. I was bounced around a lot between specialists.

There must be a better way. If you have something you would like to share, please reach out. You are definitely not alone.

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