“Another name for this is suicide disease”. Almost 4 years in I could totally see why. It is lonely…Why you might ask, I will tell you just a few reasons (there are many more)..
Lack of knowledge. There is a huge lack of knowledge of CRPS. Many doctors have not even heard of it, which is sad. They can’t give you a straight answer on why it happens. Or when it will flare up. So many questions left unanswered. This limits on who to go to for treatment.
Not only lack of knowledge with doctors but also with friends and family. it’s hard to explain what you are feeling sometimes. There are no words that quite hit it. This can be troubling with doctors and family. Being through it, I know I wouldn’t have been fully able to understand the depth. This leads you to hurt by yourself. To put that smile on when you leave your room. It’s easier that way…or so you think.
Canceling plans. This one has been hard for me. I make plans with my family members or friends and then last minute have to cancel. This makes me feel guilty too. It’s hard to explain that you just can’t when you look fine. You will find who your true friends are through this, learned it through experience. So you have that in your mind too, am I going to lose this friendship over it. Sorry to say but you will. There will be some that you thought were there for the long run but this will show you that they were not up to the task.
Losing friends. Started on this in the last paragraph. I definitely have found who is with me through it all and I have put more energy into them instead. I can handle disappointment better this way. There will be friends and family members who just don’t get it. I hate to say it but for your health you have to let them go. You can’t worry about what they are saying. Not every one will understand and that’s not for you to fix.
Isolation. This disease can keep you home. Physically and mentally. Staying there too long causes even more isolation, more depression. I also find it easier to keep the pain in than sharing it which emphasizes on the loneliness. Not a good idea.
You need COUNSELING and SUPPORT GROUPS. This is a must. Also note that I put and, not or. You need both. My doctor advised me on this right away. I found a great Christian counselor that is local and then couple great CRPS (specific) support groups on Facebook. Both have been great for me. They can trigger different parts but yet bring it all together.
The biggest tool in the box though is you need God. He gives us great add ons with these things but the ultimate help is the one true God. let’s get real, humans are humans. They will disappoint us. Even more when dealing with these kinds of things too. God never will. He is the same yesterday, today, and tomorrow. He is there for us, loves us, and is crying with us. I pray that you can feel His presence, His comfort, His love. You are never alone! He is waiting for you to invite Him in.
I would not be able to do what I do if I didn’t have God. I am who I am, where I am because if Him. He gives me the strength to not give up. To not let the loneliness win. To not let the devil win. I’ve got this because of the Holy One. I pray that you too will allow God to take over and give you a new perspective on life. To help fill that loneliness sometimes. We got this! 🧡