masks, research, pain, hiding, support

Today I would like to talk about masks, even though it is past Halloween.

We all wear them. You may wear yours when you are around your spouse’s friends whom you really don’t care for, or when around those family members you really wish weren’t on the family tree.

I wear a mask for those instances as well, but I also have a mask that I wear which hides the pain I feel daily and the hurt I feel when people around me often do not understand what I go through, even though they are around me often enough to see the effects of the disease.

People with an autoimmune disorder do not want sympathy or pity. We simply want to get the word out about our diseases in order to have understanding. I do not make plans and then back out of them simply because I am lazy or don’t want to go. I do not miss work because I don’t want to go in that day. I don’t go to visit you because I don’t like you or don’t want to; it is because I either can’t, or am afraid that if I make those long trips, I won’t be able to make it back home or in so much pain and discomfort that I can’t enjoy the visit.

That is why there are so many blogs and different websites available today. We have decided to fight and do our best to raise awareness. I have to say that if someone tells me they have a medical problem that I am not familiar with, I will do a bit of research into it to see what they could be going through. Most people do not.

Another item that we, people who have RA, are trying to do is change the name of our disease from Rheumatoid Arthritis to Rheumatoid Disease or Rheumatoid Autoimmune Disease. We want the arthritis portion of the name removed. While the disease does affect the joints, our major organs are also a part of the package and when people hear the word arthritis, they instantly think we have Osteoarthritis, that this is just a part of aging, and we just need to get over it.

For those who have a disease, no matter what area you live in, whether there is an official support group or not, you HAVE to find your own support group. While I am very active with the Arthritis Foundation, they do not have anything I can take advantage of in my area. I belong to several groups on Facebook, follow several bloggers, and depend on friends and family to be my support. I have learned that you can’t depend on everyone you interact with daily and you have to be careful who you choose. There may be times when members of your support group are so focused on something going on their own lives that you may be required to seek someone else in the group. Sometimes, you have to figure out how to handle that day by yourself.

I remember as a child I couldn’t wait to grow up so that I could do what I wanted, when I wanted. Wow, if I could have only known what adulthood was actually going to be like! If I had only known that this disease would so prevent me from accomplishing simple things, I would have enjoyed my youth so much more. I would have spent more time with my family than working toward the so-called American dream. Yes, I have regrets in how I have done things in my life, but I have two children who couldn’t make me more proud than they do today. I am so pleased with the people they have decided to share their lives with and feel so blessed that I am one of the lucky ones who like and enjoy their children’s choices. I am also blessed with two of the most wonderful grandchildren anyone could want who live so close that I can enjoy them daily. I know that I tend to ‘overdo’ it with the grandchildren, getting on the floor to play with them, twirling them around, dancing around with them, and all the things I probably shouldn’t do, but I also know I want them to have memories of their Nana playing with them in that way, because I am not sure how much longer I will be able to do it. I don’t want them to only remember the Nana who can’t do those things.

So remember, just because I don’t look sick to you doesn’t mean I am not. If I don’t seem to be in pain, I really am, but I hide it because I don’t want your sympathy or pity. All I truly want is understanding, not judgment; research, read the material available, try to understand what my life is like, and finally, understand that the fact I am doing the best I can.