I have always had a Type A Personality and been a perfectionist. Overachiever? Ha, that is an understatement. Never settling for less? You betcha. I wasn’t going to let being diagnosed with Systemic Lupus get in the way of my goals. However, I soon found every day was hard for me just to live life. I can count on my hand how many times I wasn’t in pain compared to how many days that I was in putting up with my pain. The beginning of this year started my second straight year of having to use FMLA at work due to my lupus. My fatigue and Fibromyalgia seemed to be getting worse and wasn’t showing any signs of letting up.
My friend Britney recommended that I should go on social security but I was too proud. I also didn’t think I should go on disability because I knew there were people worse off than me. I felt guilty just even thinking about going on disability.
I try to read all the different Lupus books because knowledge is power. They generally have the same information but sometimes you can catch something that is different from the other books. I am disappointed that most of the books are informational and there are not many memoirs. I recently came across one that really made me consider applying for social security. Despite Lupus is written by Sara Gorman and I highly suggest the book to any Lupus patient. Not only was it informational but it also gave excellent examples of things she has came across living with Lupus. She has a certain chapter in her book regarding asking for help. I am not one to ask for help but that section helped give me the strength to really consider going on social security.
After 10 painful years, I swallowed my pride and decided that I cannot do it anymore. My doctor and I decided that I should not return back to work. It is really bittersweet. It’s hard to be able to leave my status and income that I worked so hard for. But it is nice to finally be able to take care of my health and my lupus, and not feel stressed or guilty about missing so much work.
And as you are thinking, “Yeah, must be rough not having to work and to do whatever you want!” you can immediately toss that idea out the window. Yes, it is nice not having to work. But most of the time I am too tired to function or I am in so much pain that I physically can’t do anything. Healthy people take for granted what it is like to feel good every day and cannot even come close to comprehending what myself, or another Lupus patient, goes through. I often find myself getting bitter when I explain to someone my situation and they say, “Oh yeah, I understand.” Technically, they don’t. So to all the healthy people out there—if you are talking to someone that has an illness try to use, “That is understandable” instead. This will put the patient more at ease.
Right now my employer’s short term disability insurance is deciding whether or not to accept me. I originally was on short term disability for my gallbladder surgery which then triggered my lupus to go out of control (and still is after almost two months from my surgery). So as of right now, I have no income. It’s something I never thought I would have to go through. I’m glad that I am so anal retentive and that I pay one month’s rent in advance because I don’t know how I would come up with June’s rent.
I once again had to swallow my pride and apply for social security since I don’t have a crystal ball to see if the insurance company will accept me or not. No help from my Magic 8 Ball. I kept turning it over but continuously got the response, “Reply hazy, try again.”
Knowing how the government works, I expected the application portion to be long and tedious. I like it when I am right! Once I finished the application, a two hour phone conversation with someone handling my case followed. She mentioned the “average” waiting time is three to four months. I know someone’s uncle that had to wait six months and someone else that had to wait 18 months before being accepted. So I give it about a year. Word in the doctor’s office is, that the majority of people get denied at first. I don’t plan on being one of the lucky ones getting accepted right away. I’m not looking at it negatively, I am just being realistic. Also, this way my little ego won’t be as bruised.