Some members have asked me to re-post this.
I wrote this for a member and friend of mine because someone was harassing them because they didn’t believe in RSD/CRPS.
You can use this and take out my experience and add in your own. Never let someone make your feel bad for something that you cannot help. Do not hate yourself just because you have RSD/CRPS, you are a wonderful person and deserve love.
If you need to talk to someone or feel lonely, and like no one understands please email us at firstname.lastname@example.org
To whom it may concern,
I am the Founder and Creator of RSD/CRPS Doesn’t Own Me Online and on Facebook. I found out today that you both do not believe that RSD and other Chronic Pain are true conditions. There are Millions of people who have rightfully been diagnosed with RSD/CRPS. Why? Because they are in horrid grueling pain 24/7. Now I understand you think that we say we are in pain because all we want is a disability check. That is not true. Imagine not only being in pain but having to hire a lawyer to handle your case. For me mine is a workman’s comp case. Your life is no longer your own. I was extremely young, 19, when I was working and a 1/2 ton metal cart ran into the back of my left ankle causing a major injury. Soon after I started having burning pain that was more extreme than the pain I would associate with a severed ligament. No one could touch my leg and ankle. I couldn’t walk, I couldn’t sleep, nothing would cease this horrid burning within my own body. I wished it would stop. Soon I had to start the Workman’s Comp process. This has been the worst and most humiliating thing I have ever dealt with in my life. I did not choose to be a part of it. I had to because my employer paid for my medical visit. Once they do that you cannot get out till your condition is better. Well it didn’t it got worse. My ankle kept swelling and swelling. I had major Allodynia and major Edema. I lost all of my hopes and dreams in front of me. Doctors gave me no hope. The worst thing was the people I had always counted on. The ones I thought cared about me or any part of my family started calling me a liar. I wish I knew why people are compelled to call us liars just because they cannot see, touch, or feel what we are going through. You cannot see, touch, or feel the sun at night but because it reflects off the moon you still know that it is there. Why is this any different. Just because you can’t see, touch, or feel our pain doesn’t make the swelling, the color changes, the abnormal hair growth and nail growth go away. To belittle someone because you yourself are not going through these trails does NOT give you the right to call them a liar.
Till you have had to sit in your room in the dark, crying, not able to breath because the slightest movement will cause your pain to flare higher then it already is. You cannot say you truly understand Chronic Pain. To have your body lie to you and say that your veins have been drained of blood, refilled with Lighter Fluid, lit on fire, wrapped in barbed wire, and then placed on a BBQ Grill you will never empathize. Until you put aside your own pride that is causing you emotional pain you will never be close enough to an RSD Angel to help them. We don’t need judgements, hateful stares, and words said harshly under one’s breath. We NEED Love, compassion, understanding, support! If you aren’t doing those things you are nothing but another branding iron upon the millions that are already piercing our skin. So I would like you to look into your heart. Seriously think, in the future when someone asks you, “Why didn’t you believe in their RSD/CRPS?” You better know that you are not only hurting the person with RSD/CRPS, you are also causing a world of hurt to yourself. You never know how your not believing can effect the person with it. If you have a shred of decency inside you, you would swallow your pride and apologize and then educate yourself on RSD/CRPS and help us in our venture to find a cure. So that we can help someone’s future daughter or son from living the rest of their life with 24/7 360 degree pain.
Thank you for you time.