When you are first diagnosed it can be a moment of relief because you now know that you weren’t making it up and there is no longer an “unknown” factor. The truth is it’s only a label. Just because you have a name for it doesn’t mean there is a treatment, or anything else is known about it.
I remember feeling relieved when I was told I had Central Pain Syndrome, but soon after I realized that I still had an uphill battle. The battle of pain management. It’s been 2 years since my diagnosis and I am no longer on any medication. It’s unfortunately not from being better, but because nothing worked. Most of the time the medications made it worse.
I realized that with Central Pain Syndrome it can be hard to tell if my pain is from an injury or the illness. There are times that I get frustrated because I’ll get shooting pains through out my body, or I’ll get pins and needles in my feet. When these happen, I am afraid to say anything because I don’t want to come off as constantly complaining, or like the boy who cried wolf.
I am scared that I will never be free of pain and I am only 25.
I am scared that when people ask how I am, I’m only going to be able to say “I’m okay”, or “I’m the same.
I am scared that I will have trouble taking care of my future kids because of my pain.
I am scared that I will make the people I love disappointed.
I am mostly afraid that I won’t be good enough.
I have talked to many others that also deal with invisible illnesses and it can be scary because we look normal and healthy on the outside but are broken on the inside. Sometimes it is easier for others to empathize with someone who is visibly ill.
I will continue to do whatever I can to help others as well as myself feel like they are heard and to BE FOREVER STRONG.