Sunday, June 30, 2013

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: " 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.


Kate Stout said...

So... My advice is everything you said and find something to do that takes you out of your self. That's going to be different things for different people, but might be things like making music or arts or crafts (or baking Julia!).

For me, I've discovered I feel much better when I'm doing something for someone else. Now the range of useful things I can do is much reduced, but I volunteered at my local library, helping people with computers (something I knew about from when I worked). Two hours a week, I met a lot of nice people, and I felt useful.

Can't do that any more, but I'm often picking up little projects - help someone revise her resume, doing genealogy for family and friends. I'm not focusing on me, feel like I'm being helpful.

On the days when I think too much I do get worried about the meaning of it all, I feel like I don't know if I have a purpose, but I'm learning to push those thoughts aside, and remind myself that my purpose is to love my friends and family the best I can, keep my self as well as I can, and try to be a nice person in a complicated world.

It's a really different list from my "purpose" before Sjogren's, but it's not an entirely bad one1

Unknown said...

I focus on what I CAN do and thankful for every good day! It also helps having a great family!

Anonymous said...

Trying to re-find an identity is difficult. My sister once gave me a refrigerator magnet that said "Life is not about finding yourself. It's about creating yourself." Fortunately, I can still read, research and create jewelry and art. -- Sally

Anonymous said...

You also need to focus on enjoying what you do manage to accomplish. Good advice all around, everyone.

Julie said...

Its really hard , esp if you have spent years dedicated to the education and then working at your career, as it seems to form a good part of our identity. It is hard when you have to give that up..though I have had many people tell me that once a nurse, always a nurse.

I think all the ideas offered up are really good. I would add that it takes time, and months and years but gradually , you will find your way. I have found many other RAer and sjogrens friends online, and I try to use part of what i liked about nursing, to help them by just being encouraging,,,and also sharing anything , if they ask, that may be of benefit, of having gone through many years of RA and Sjogrens and related autoimmune disease problems, doctors and frequent hospitalizations, and meds I have tried...such as the 6 bios that did nothing for the RA, but remain on the methotrexate and now Rituxan.... And always , just trying to give hope, and not to sound like I have all the answers but in many things,I have learned the chronic disease is a marathon, not a sprint. Or another way i call it: A hurry up and wait disease....Hurry up and wait for the diagnosis, hurry up and wait for the right meds, hurry up and wait, some more!

Our friendships, family relationships all have to often be redefined as well, but though we have a chronic disease, we still have our hearts and souls to share with others. Even if i could not physically attend my sons' school events sometimes, for example, I am always here for them and can talk, share and guide them as best i can. I can still encourage and love my husband, despite these diseases... That is just a few ways I have found, to still feel like a worthwhile , contributing person to this world.

Annette said...

I've complained in the past that I hate the pace of autoimmune disease. You just don't get a fast resolution or quick and certain answer.
It's always a "let's try this for a while"
Blogging helps me too. It took a long time to learn what I know and it is satisfying to share it with people, though I admit to being more helpful when it is purely local advice. Your blog is very detailed and you're always there. It is a lot of work to blog and you are so thorough.

Anonymous said...

I've had Sjogren's for nearly 20 years, and my purpose seems to be educating the various medical personnel that I see about Sjogren's-I've taken brochures and literature to my dentist, eye doctor, and other specialists as it seems so many doctors are not really that knowledgeable about the various ways that Sjogren's can manifest itself (beside dry eyes & mouth).

A couple of members in my local Sjogren's support group even buy the Sjogren's Handbook (from the Sjogren's Foundation)to give to their doctors!


stephanie said...

I'm thinking that your comments to this woman could just as easily have come from an elderly person lamenting their change of life. (Not implying that you're old, heaven forbid!!!) But really, how different is what we go thru different than elderly people? Who remember all the things they USED to do. Who can't get around anymore as easily. Who have to find comfy shoes. Who are now retired and want to find meaning in their lives. Who go to so many doctor appts. Etc, etc, etc. Hey, maybe this is giving us a jump start on being able to deal with old age when we get there!