Just because you cannot see my pain doesn’t mean I have to validate its existence to you. I don’t owe anyone proof or an explanation of my pain. If they doubt its existence that is on them, not me. What I do need to do is manage my pain to live the best life that I can with it. And that is a damn hard job to do. Chronic pain is very difficult to manage and with comorbid depression I have a bit of a battle on my hands the best of times. I generally don’t care to explain that battle. I generally don’t care to express it. Or share it. And I don’t have to. We have a select few who truly matter that may get a window into our existence that really matter. The rest? We owe them nothing.
Coping is a deeply difficult journey that we are on. I doubt anyone can comprehend it that hasn’t experienced it. It is not just that it affects every aspect of our lives, all the people in our lives but it changes who we are as well. It is also something we have to Live with. It actually never stops. And accepting that fact is also extremely difficult. We all want a cure, but we have to accept that realistically it is in our best interests to pursue the most improvement we can. Live the best life we can. Knowing that might mean compromises we never wanted to make.
We do not need to justify our compromises we have made for our health. Or the medications we need to take to manage our pain. The life changes we have done to help us manage our health. Or the fact that no matter what we have done to help with our pain management we still have significant pain, just perhaps less suffering. When a medical professional calls you a drug seeker who really is at fault there? You for having a medical need and a legal prescription for medical pain management? Or the medical professional for judging you on your disability? What about the person calling someone disabled lazy for not working? Do they comprehend the compromises someone has to make due to pain? No. Do you owe these people explanations? Do you have to actually validate and justify your pain to them as if you should feel in the wrong, guilty and ashamed for being chronically ill and in pain? Hell no.
You can and should oppose stigma in all its forms but never feel like you have to actually validate your personal experience. Your pain is real. You have to endure it every single day. You have to cope with it and figure out how to manage it. You have to deal with medical professionals that don’t ‘get it’. You have to figure out if you can work or work from home, or part-time or not at all… and have the consequences of that. You are the one doing every single thing from supplements to exercise to help manage your condition. When you say my pain is an 8, it is a bloody 8… on your relative pain scale of what an 8 means, and considering you have chronic pain that generally means pretty effing high. And is someone says to you ‘But you did such and such yesterday why can’t you do such and such today?’ you can look them in the eye and say ‘I don’t need to validate my pain to you but just because it was bloody freezing out yesterday doesn’t mean it is going to be bloody freezing out today. You know why? Because temperature varies. Like pain does. But you know what? Still a goddamned cold winter.’
Fact is we are often treated poorly in the pain community. But who lives our lives? We do. And damn sometimes our perseverance astonishes me. I know I have almost died from this pain and depression, because, clearly it isn’t an easy battle… but just living this life is endurance on an epic scale. I myself am a combination of strength and weakness when it comes to pain. Of self-loathing and determination. Facing stigma and self-imposed stigma. I owe no one an explanation of my pain but I owe my survival to more people than I can count. We should be made to feel ashamed, guilty or weak for having chronic pain. Or ashamed for them medications we take. Or shamed by other because of our medications. We should feel every single day we are living despite the pain or with the pain… and that isn’t weak, there is no damn shame there and certainly no guilt.
Just a week ago I went to the ER for a status migraine. And the doctor believed my pain and treated it extremely well. This was a unique and odd experience for me. Usually they give me an odd look when I tell them I cannot take NSAIDs due to a reaction I had to toradol… a look that suggests I am seeking other meds, like opiates, instead of stating a fact. Usually they don’t bother with me at that point. Offer some T3s, which i can take in minimal amounts but do not help with a status migraine. I had also gone to the ER months ago for a condition that was causing swelling around the tissue of the heart, I wanted to check into it due to some erratic heart rhythms. Due to my history they depression and suicide attempts… he did nothing and told me I had anxiety. So mental illness stigma is another facet I have dealt with as well. I have to wonder if I should now bring someone like my mother to the ER with me to be my advocate, since these doctors seem to be so hit and miss. But that first example is what it should be. I am in pain. They do a neuro exam. Ask about my pain. Confirm. Find a treatment. Treat.
Own your pain. Confront stigma when you see it. Confront your own self-imposed sigma when you find it within you. Just don’t validate your pain to anyone. It is your existence and experience that you have to live through, not them. Open up to those that matter, like loved ones and family and friends. Be clear and concise with medical professionals and insurance companies about the impact of the pain on you and hope they comprehend the pain you exist with.