*This is a transcript of the video interview from above
Today I'm talking about a topic that is so important for everyone with CRPS. So let's get into it. Let's talk about suicide.
This is something that I never really wanted to talk about and is something I never thought I would actually be talking about, but I feel like I have to talk about it because I've had so many people who have started talking to me and one of the first questions they ask is, did you ever, were you ever depressed? Did you ever have those kinds of feelings?
I understand you feel like you're alone, you feel like you're the only person going through this and feeling these things. You are not, you are not alone, CRPS is called the suicide disease for a reason.
Sometimes I meet people who say they know someone with CRPS. I get excited and say, I would love to meet them. I would love to talk to them and help them. And they say, oh no, they committed suicide. Literally that is the most common conversation I have when someone says, I know someone with CRPS most of the time it ends with they took their own life.
And that is a tragedy. That is an absolute tragedy.
I feel so disheartened, so disheartened when I hear that, but...
I also completely understand why it might have happened and how it could have happened because of the extreme pain and the extreme condition we have and how so many people do not actually believe.
I mean that's huge. When people don't believe in you and they tell you your pain is in your head. But you are not alone. You are a 100% not alone. That's why I'm out here saying things, doing things, making a CRPS blog
, helping people with CRPS because I want you to know my whole life I felt isolated.
I've had CRPS since I was 10 and I will tell you that it's at age 11 when I first thought of killing myself.
That is when I first had an exit plan to leave this earth. And most of that had to do with the fact that I had this accident with extreme pain where my parents took me to doctors and the doctors told my parents there was nothing wrong with me. It was in my head and they tried to take me to psychiatrists and do other things in that realm and I just shut up.
I just stopped talking about it. How many people out there pretty much just hide their disease from the world because people don't understand? Even doctors, even medical professionals don't get it. And you are so isolated and so alone. I mean how many people have walked into a pain specialist and they basically call you a drug seeker. Like that's all you are.
I even went in to see a pain specialist and I filled out the little sheet, you know, where you put red and symbols on a little image of a human body.
Well my CRPS ended up going whole body on me after 20 years, when I had a c-section. So, I was filling out that little chart and I was red all over and the pain specialist said this is impossible. This is impossible. And I didn't understand what he was talking about. I had told him I have full body CRPS.
I had a rule where I always tell people not to touch me without asking my permission, which I had told the pain specialist but he reached out and touched me and I started bawling and crying. He's said, I had no idea. I said, I literally just told you that. And he basically said, I thought you were just here seeking drugs. And I said, I don't even want any drugs. I don't want narcotics. What are my other options? What else can I do? And he really didn't have any answers for me. He even made me take a drug test by peeing in a cup to make sure I wasn't a drug addict.
That is where we are in our society. Where your mind is really blown away by, by what is happening to you and how people in your life even loving significant others really have no clue. No idea.
I've had CRPS for 33 years and when I got super crazy bad where I was permanently disabled, laying in bed for like four years, my dad finally tried to understand. He told me he had no idea. I said, this isn't new Dad. It's just looking really bad right now. This isn't new. And he said, I had no idea.
You think that they don't listen, but it is more about not understanding than listening. Obviously I said things to my parents, but really it's about comprehension. They just don't get it.
If you are out there and you are having thoughts of suicide, maybe you are like me who didn't really want to kill myself so much as I just wanted the pain to stop.
How many people can relate to that?
You just want the pain to stop and you think that maybe suicide is your only option, that that is your only way out. I remember when I was in my really bad four year flare kicking my butt, which I've been over now for a couple of years, but when it was really seriously kicking me in the pants and nothing was working, nothing at all was working. I would look at the bottle of the opioids or narcotics and see if I take more pills it could kill me but if I don't this pain isn't going to stop and you just pray that it passes you out instead of killing you so you have some relief. In your mind all you think about is the pain has to stop, right this second.
I might almost cry here. I'm going to tap. This is one of my ways, tapping to help get through some of those emotional things.