I have heard so many things since I decided to file for SSDI…..Social Security Disability Insurance. I have heard ….no way! I don’t see why you can’t work? , So you are just giving up?, Isn’t that for old people? Why? Whats wrong with you? , Lots of people work with illnesses.
First of all, It was a very hard decision for me. I fought it probably far longer than I should have. I had already struggled with the feeling that I was giving up. Thank you so much for verbalizing my fears. They were not bad enough inside my head, I really needed someone else to say it to me. Because that is exactly how it felt daily when I was working. An eternal struggle of my brain saying don’t give in and my body saying..I quit! I fought that feeling daily. It was hard to say okay I hear you. We can’t keep doing this. To decide that maybe there was a reason I felt worse and worse each day, each month, each year.
It was alot of soul searching and saying not only is doing this to myself not fair to me, but its not fair to my daughter. Its not fair that her mom is too tired to play with her or listen to her stories after school. It was time to set aside my desire to remain productive and successful at something and focus on this wonderful little person I was lucky enough to call my daughter. This was the highest calling anyone could reach, being a parent.
So those people who were shocked or who couldn’t see why I had to do this. They not only don’t matter, they missed out. They missed out seeing a more relaxed mommy interacting with this wonderful child. They missed seeing this child flourish on a mommy who although isn’t out of pain, is able to be more.
As if the comments above weren’t bad enough, I also found the ones who said ” Good for you!”. Now I know they mean well and I know they think they are being supportive. But I still have some guilt about even filing. I feel like I am taking advantage of the system. Its hard for me to let go and just do what my body needs. Its hard for me to accept that there are programs to help. I feel like I should be doing it myself. I feel like I just gave up and people are congratulating me for it.
I don’t really know what the right response is. I still have a long ways to go before I am at acceptance of this. There are days that I feel good and I think….I totally could work a full day. Later that day reality sets in and I am out of steam by four pm. Dinner and homework and bedtime now seem like huge tasks. There are those days that I feel crappy and am glad I don’t have a full time job other than being a parent. I am trying to use those good days more and more to be as fully involved with my daughter as I can.
People see my complaining as just that complaining. What they don’t see is once I have verbalized it. I usually get up and force myself to do exactly what I was just asking for Minions to do. When it comes to pacing myself and not over doing it. I am my own worst enemy. Once I verbalize it, its enough to make me feel bad for it so I get up and do it. Even when I should just listen to my body and not do it. Not do the dishes and not do the laundry and especially not vacuum. I do them and pay for them and beat myself up for doing to much. Its an invisible fight that people just chalk up that I am lazy or I am “milking it”
You would think that if I was not working that I would have so much more time and energy to invest in house cleaning or running around. Fibromyalgia doesn’t know the difference of employment verses unemployment….it flares either way. It goes to war against me each and every day. People say oh well at least its not fatal. Did these people know that the number on killer of people with Fibro is suicide? They say well at least its not progressive. No it technically isn’t but you don’t get younger so other more standard things that happen as you age start to happen. Which makes the symptoms of Fibro seem worse. So its a constant struggle to find the right meds to take the edge off, to find where my limitations, to just survive.
So for the record I have not given up and I did not give up when I filed and I won’t be giving up anytime soon either.