If you are silent about your pain, they’ll kill you and say you enjoyed it- Zora Neale Hurston
This quote has stuck with me a long, long time. Because something about it sort of struck me as intrinsically true for chronic pain.
The first truth is Insurance Companies.
They will when you are on a long-term leave come up with these random things for you to participate in. It could be physio or exercise or yoga or acceptance therapy. Could be anything. To ‘help’ you. You know you have to do it or you are ‘non-compliant’. So you do, because it may very well help you cope better. Then they find some reason to do with that, nothing to do with actual reality mind you, to cut you off. Because you are silent. And my recommendation if you are in this situation? Don’t be silent. Tell them what hurts, when it hurts, how it hurts. When it is difficult when they expect too much. What happened Afterward? Where you laid out that day, two days, three days? Did it amplify your pain? If anything happens say so.
Document your chronic pain
Document it yourself very carefully and in detail. Because they will say you improved enough to go back to work even if your chronic is pain is still unmanaged. And they will say you enjoyed it even if you are suicidal due to the pain. That is what happened to me. Said I was significantly improved, even though my pain was completely unmanaged, I was depressed, and suicidal. I went on 3 more short-term leaves and another suicide attempt… so much for ‘significantly improved’.
Remember: they want your silence. They want you not to fight. To stop fighting. To just give up hope. They want that. Always remember that.
The second, broader. It is society itself and people we encounter like doctors and employers who we have to deal with chronic pain. If we suffer silently they will kill you with that pain and think it is fine to do so. That pushing through it is the way to go. That forcing you to conform is the way to go. That more pressure gets more results. That ultimatum will ‘help motivate you’. But you have to be clear and concise with people you encounter with your chronic pain. This pain is getting to me. I Cannot cope with it. I Cannot function with it. It is making me severely depressed. Otherwise, their indifference will kill you with pain. Their forcefulness to get your to conform will kill you with pain.
Yes, they will think it is okay to treat you as they do unless you stand up for yourself. Demand treatment from doctors. Demand accommodation from employers. I never have gotten anywhere from being polite, accepting and trying to please others. No, I blame myself for everything. Being sick, being unable to function, failing to function and for not being able to push through the pain all the damn time. Blaming myself though is self-stigma. I get blamed enough by others that I really don’t need my help on this one. We need to stand up for ourselves.
When we are in severe, relentless pain we have to advocate for ourselves. We are often undertreated. Doubted. Judged. Stigmatized. Beaten down and blamed for what isn’t our fault. As we are simply struggling to Survive. It is amazing that they have no clue what a horrific impact they have on us. How drastically their treatment can actually make us significantly worse. As for insurance companies… well, who even knows what their ‘burden of proof’ line actually is. I certainly don’t. But then again, they simply do not want to pay out, do they?
For far too long I lived in self-blame and never stood up for myself. I earned myself severe depression and suicide attempts. They don’t care unless you make them care. You have rights. This isn’t your fault and you deserve proper treatment, accommodation and disability if needed. Just remember to take care of yourself and don’t be silent.