As I have been immersing myself more deeply into the chronic pain communities online (i.e.Facebook and instagram) I have found an alarming and dangerous trend. The messages are so much worse than I thought... It needs to stop now.
Too many people are afraid to stand strong and face potential backlash but I have decided that today, I will start weathering the storm becauseI am fighting for you, I am fighting for all of us to find freedom from the power chronic pain has in our lives.
REAL TALK:
- Change IS possible. Not only is it possible, it is inevitable with the right support. We are harming each other deeply by creating messages that let us feel that it is ok to be helpless and hopeless. You can ABSOLUTELY take back control of your life.
- Taking advice is NOT A BAD THING. I cant even describe how many times I see a post from a chronic pain influencer that says that 'WE' want people to stop giving us advice and trying to help us because it does not work. That is a load of BS. Why on EARTH would we not want all the help we can get when our struggles are so massive? Why are we leaning into this ideology? It needs to stop.
- Our families LOVE us and they WANT to support us, they just don't understand what it is like to be in our bodies so it is difficult for them to know how. Let's stop spreading the message that isolating ourselves from people who don't understand our pain is a good thing. It is NOT. Let's educate our loved ones, bring them to the doctor, show them what a day in the life looks like for you and what you struggle with that they can not imagine. (note: I understand not everyone has loving families, this is a statement in general and if you are one of those who does not have loving support I am sending all the love in my heart to you)
- It IS ABSOLUTELY ok to grieve over your illness and be sad. It is OK to be angry and feel like it is unfair. It is OK to be frustrated by the lack of options your doctor gives you.I think that is a beautiful message. Where it goes wrong, is that we don't add the primary piece of that equation. It is NOT ok to stay in those feelings. It is NOT ok to constantly remain in that state. Do you know why it is not ok? It doesn't effect me one way or the other what you choose to do. The harm it causes you though... That damage is something I can not be ok with anymore and it is EXACTLY why I have decided to speak out.
The impacts that chronic pain have in your life DO NOT have to be permanent. I see this message all the time, how 'we' wish people could understand that our suffering is forever. I say heck no to that. That is just plain false. A better life is possible.Period.
- People that do not have chronic pain are not our enemies. They are people with a past just like you and me. It is my belief that most people are good. When we label someone as 'normal' 'typical' or non-chronically ill we separate ourselves from those people which I believe causes a lot of harm to us. Hey there, WE ARE NORMAL TOO!When we base our whole identity around being chronically ill we isolate ourselves to the point of no support ( and we desperately need loving support).And if someone doesn't understand what you deal with day in and day out you have three options: 1) do your best to educate them 2) have compassion for them in their lack of understanding and be grateful that they don't have to go through what you do! or 3) get angry about it and isolate yourself.
This is my loving message to you today. Change is possible. And we have to stop leaning into beliefs that keep us sick and miserable.
