Lupus after Diagnosis. Feelings of Vulnerability. Do they go away?

Exposed. That's the way I felt when the appliance repair man asked me to empty out the contents of my freezer. 😳

We run a pretty neat and tidy household. But my freezer, while not being overloaded, has been overlooked these last few months. I pulled items out, and slapped them onto the counter as he looked on, feeling more vulnerable as I went. Who knew frozen corn and old popsicles could do that do a person? 

But I do remember those feelings of vulnerability and even embarrassment when I was first diagnosed with lupus. Being poked and prodded in places I didn't know existed was unsettling.  I didn't like divulging all the symptoms I was having, describing in detail the wacky ways lupus affected my body. I also resented the fact that I had to recount all this to intake people, nurses, doctors, and lab techs, none of whom I knew, but each of whom knew ALL about me. 

It's a very difficult time, the beginning. But then, a strange thing happens.  Over time, you start to see how honesty and openness with your healthcare team enhance your appointments. You gain confidence in rattling off your symptoms. You come to know every inch of your body, and willingly point out when changes have occurred, especially when they are overlooked.  You talk candidly, and forget nothing. You prepare notes on it all, and recruit a friend or spouse when you need backup. 

After a certain point, you speak up in appointments with a degree of certainty you didn't know you had. You are in command at the pharmacy. You advocate for yourself without thinking twice. You correct your medical team when they are mistaken. You talk knowingly about your disease. You take on the insurance company like it's nothing. (Well, not NOTHING. But at least you learn how to spar!) 

The confidence gained doesn't necessarily make things easier, but it does change how you think about yourself. You realize you are capable, relevant, and proficient.  I'd even add accomplished. And experienced. And successful. . 

If you are living with lupus, having navigated the world of a chronic illness for even one day, you are all of these things. Don't let vulnerability or feelings of exposure fool you. You are doing amazing things. Keep it up! 



Anonymous said…
I was diagnosed 10yrs ago. I thought I could go on as if I didn't have a disease. It worked for awhile until my disease started having its way with me. Weakness,swelling in the ankles, wrists almost locking up and swelling. Not listening to my body when it said stop.kept going and was bed ridden for at least two days. Now I listen. Septic pneumonia 3 times this year. An abcess in my kidney septic again. Due to a stone that blocked urine which turned into a kidney abcess. A Stent was put in to bypass the stone allowing the infection and urine to leave my body. Had the stone removed. Stent will be removed in a couple of days. I'm so sick of being sick,and tired and not able to keep my home clean, I sleep in fits and starts. I hurt all the time. To look at me you would say there is nothing wrong with you. I don't like to meet new people, I'm tired of explaining. I'm just tired.
I'm afraid to do anything. I fell out of my trailer for gods sake! Shopping is so hard for me that sometimes I just don't go and we go without. I have panic attacks in large groups that I have left my cart and left the store. I feel very vulnerable. I have cognitive issues and have gotten lost on bus routes that I have taken many times before.numbers are a nightmare. Does this kind of some up where I'm at? It's got to get better. I'm seeing a therapist and she gives me great insight, I just started so I am optimistic that it will help.
Sara Gorman said…
Anonymous-I am so sorry you're at the end of your rope! I have been there many times, but have crawled my way back. I am confident you will, too! You are making great strides as it is - reaching out for help with a therapist is a HUGE move that you should feel great about. Taking steps to feel better - that's all we can do, and you're doing it! And admitting the mistake of not listening to your body is a great step, too! I remember all too well ignoring the distress signals my body was sending, and the havoc that can cause. So you're ahead of the game there. (Although I had to use some major restraint and self awareness to KEEP listening 😳 So just keep at it, and check in with yourself often to make sure you're really still listening and being objective!!) And letting life's tasks fall by the wayside IS part of listening, so as hard as it is to let the dishes or cleaning go, it's a strategic move on your part to conserve your energy to get better! (I just sent an old post to another reader who was struggling with this. It's here if you want to read it:

My hope is that following your pending procedure, combined with the work you'll do with the therapist, in conjunction with your efforts to listen, you will see a little teeny bit of improvement each day. Not monumental, but at least a baby step forward. Those add up, and before you know it, you will be in a better place emotionally to handle whatever comes your way physically. Best of luck. We will be thinking of you!!

Popular Posts