A Letter to Those Who Don't Know What Chronic Pain Feels Like
I am one of millions in the world with a chronic condition called Central Pain Syndrome. It is one of the most painful conditions and there is currently no cure. Many people who suffer are in such tremendous pain that it sometimes feels as though they are burning, freezing, being stabbed or torn.
It is not well known as most chronic illnesses aren’t. It can be very lonely because no matter how supportive our friends are, or feel like they understand our pain, they unfortunately don’t. This is something that only people who have it will fully understand and there are plenty of times we still can’t fully understand.
Yes, we look completely normal on the outside, but we feel like we are dying on the inside. Our brains have become so sensitized that just a simple touch could make us want to jump out of our skin, the cold temperatures can make us want to shrivel up, and even the shower can feel like it is razor blades on our skin. It can be hard on relationships because everyone wants to be able to touch their partner without the felt need to fly across the room in pain.
You may see us with handicap stickers, or go to lunch with us, but then we are so spent that we go home and lay in bed the rest of the day. We may sometimes have to cancel plans last minute because it is such a bad day. Sometimes we can’t even work because we have horrific pain and we are fuzzy in the head. There are days that we can’t do anything except lay in bed because our whole body is on fire along with severe migraines. Sometimes people see us and think we are lazy and need to just get up and move. From someone who loves being productive, working, and spending time with friends, I can assure you that is not the case. Would you be able to be productive if it your body was so tired and in pain that it hurt to speak?
Just be patient with us and allow us to do what we need to do to help our bodies. If you want to be involved, please ask us questions. Please don’t just give us advice. We need to bring awareness to Central Pain Syndrome and Chronic pain. The more people that know about it the more people that can be helped.
Questions or comments? Join the CPS patient conversation at our closed Facebook group or email us at email@example.com