Autoimmune Disease Changes Everything

I recently received a message on Reasonably Well's facebook page from a sjoggie who is struggling with the enormous changes that autoimmune disease has brought to her life, including the inability to work. She asked a simple yet very difficult question: ".....how do you find a new purpose for living?"

Here's a sampling from my long and rambling response:

Ahh. Finding meaning in our new lives with autoimmune disease..... it's so hard. To be completely honest, it continues to be hard. Yes, you're right -- I did struggle with being at peace with not working, but the actual decision to quit was easy to make. My body just refused to get up and going anymore. My brain and all logical thinking went on strike. It was abundantly evident that I simply wasn't able to carry on in a professional role, and so I quit my job. But now all these years later, I still need to readjust my attitude and deal with the sense of loss and change that never seems to be quite comfortable. 

I find myself constantly wanting to look backwards: "I USED to be able to do this; I did such and such before Sjogren's; When I was still working, I would....."

This is a strange habit that I fall into. At times it's weirdly comforting to know that even though my body and mind aren't cooperating right now, there was once a time when I could function at a much higher level. But then after a certain amount of wistful remembrances, inevitably I would become increasingly upset and sad about my current state of affairs, which is not particularly good. But that's the nature of this dumb stupid disease, right? The quality and characteristics of our health can change on a dime. In a minute, or an hour, or a day. Uncertainty about it all doesn't make any of this more pleasant. 

I'm constantly working on limiting the amount of time that I spend thinking about my past; instead I've been trying with limited success to look ahead. To make distinct efforts to plan something -- anything -- to look forward to. Even if it's as simple as setting up a phone call with a friend. I find that if I have ANYTHING besides a doctor's appointment to put on my calendar, then I can look at that one little thing with an expectation of positive result. 

I have found that writing my blog has provided a great deal of positive reinforcement for me; I'm humbled and glad that others find it useful too; but the truth of the matter is that the simple act of writing my experiences down and then just putting them OUT THERE is cathartic and helpful to me. Perhaps you might consider beginning to do an online journal at the least or -------- maybe start a blog of your own? Blogger and Typepad offer free platforms and simple tutorials for getting started.......... The world needs to know more about autoimmune disease and Sjogren's syndrome in particular! By increasing the number of our voices, awareness may be also increased.

Hang in there, girl. I really do understand what you're experiencing, and I wish that I had better answers for you. But know that I'm here.

Guys. I know that you have better answers and suggestions for this reader than I do. Share them.