RSD United

Every single person in this world needs to feel supported. When you are dealing with a chronic illness you need that support more than ever. You need a strong group of family and friends who are willing to learn about your illness, let you vent about the horribleness, help you laugh to ease the pain, lend a shoulder when you need to cry, zip their lips when you want to pretend to be normal, and stand by your side even when you are not fun to hang out with. If you don't have that support then it will be very easy to crawl into a hole and become overwhelmed with self pity.

In my opinion the first 5 years of RSD are the hardest. You will need to mourn the life you once had and your dreams for the future. Learning to live within this "New Normal" is mind boggling. It becomes harder when you need to live through this pain and find that those you thought of as friends just stop coming around because "you aren't fun anymore." You get angry and you feel a sense of loneliness you never imagined. Your friends might say "Call me" but really what you need is for them to reach out to you, after all they know you are going through something painful and scary.

Family and friends can be afraid or confused by your RSD diagnosis. It saddens them to watch you struggle with so much pain. A friend who used to be so filled with life they now see a different person. They may not know HOW to help and support you!

If you or someone you care about has been diagnosed with RSD the first step is to get support. Support makes a bigger difference than you could ever imagine. Sadly for some people it could be life or death. We all need support in life but someone with a chronic illness needs that support to make each day a little brighter, a little happier, a little easier to deal with pain.

In the beginning I had my parents and my sister and few friends who didn't get scared. I understand that back then we were all just teenagers and lacked the maturity to properly deal with the situation.  Plus back when I was first diagnosed we didn't have a lot of information available to help bring Awareness to those in my life. For those in my small support system it felt like we were finding our way in the dark, not being able to see the big picture.

Growing up with RSD has taught me exactly how lonely this process can be and how important it is to reach out to others. Over the last 5 years I would go onto various on-line support groups, reaching out to others so they can see that it is possible to fight RSD and live a happy life. Then about a year and a half ago I was invited to join this one support group - RSD United. The group was founded by someone else who was diagnosed way too young with RSD and yet she found a way to live a happy life and created RSD United as a support group to help others not feel alone. That is what a support group does, it makes you feel supported and not alone! Within this group I have been able to make many on-line friendships with people who feel like I do. That just because RSD is painful it doesn't have to mean the end of your life. You just have to learn HOW to live within your new normal. With the help of this group you do not need to feel alone. We become United in our fight against RSD.

Today my circle of support has expanded. I have my husband who is my rock. I am blessed to have his loving hand and endless support. He knows what I need and is always next to me during each hurdle I have to climb. Simply an amazing man to have my back. With my husband I have also gained his parents and his sister. I will always have the support of my own parents, they are only a phone call away if I am in need. My sister who lives far away is always available to me. My best friend who lives an hour away but text messages me daily! I live within a community who helped deliver home cooked meals when I was unable to provide for my family. I can feel the prayers of the many who simply couldn't do more than send their love and hopes up to God's ears! I might have felt alone during my first few years of living with RSD but I cannot say that anymore. I am blessed with the amount of love and support that surrounds me. And while my son's cannot support me during my pain their smiles and their laughter are the best medicine anyone could ask for!

I have found that a big reason why RSD'ers lack in support is the fact that "You don't look sick" or "I never heard of that before." Trust me this can be very frustrating to hear. Everyone knows about Cancer and most know about diseases like Lupus and Multiple Sclerosis but Reflex Sympathetic Dystrophy Syndrome? What is that? Please do not compare these disorders it minimizes there horribleness to get into a debate about which one is worse than the other. After all, you cannot compare an Apple to an Orange, they are both fruit but from different trees. So please do not compare RSD to Cancer - it is not a fair comparison.

"But you don't look sick!" I have heard that from some of the people closest to me. I think it is a compliment but more often it is their excuse to not support you. Honestly, I didn't get their point of view till I read an article titled "The Spoon Theory" by Christine Miserandino. The article is a type of recap of a conversation she had one evening with her best friend. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ If you have taken the time to read my blog then you should go one step farther by reading this article. If you are the one living with RSD or you are someone who has a loved one with RSD it can open up a discussion that felt off limits before.

I hope everyone can find a great support group or become that support person the RSD'er in your life needs. It makes the biggest difference in dealing with RSD.