I was diagnosed 11 years ago and have worked ever since then. Six years ago, I took a promotion and I have seen more symptoms and disease process, with the increased stress of my job over the last six years. I am just now at a point, where I am having to consider requesting an ADA accommodation or early retirement, if possible (which I hate to think about). Good luck and hope your health improves and you remain in remission!
I am about to turn 26 and was diagnosed a year ago. I was actually out of work voluntarily, for what I thought was going to be just the few months while I relocated to CA, repeated my MCAT and applied for medical school. Throughout that few months, my mysterious brain fog, fatigue, pain and overall illness built to intolerable levels and led to a diagnosis (very quickly, which I am so thankful for!) I have not worked the entire time since… That is, other than the work to come up with a new career path and get myself into graduate school in a field I had little specific background in: speech-language pathology, which will give me a lot more flexibility to work a lot or a little, at the hours I prefer, to continue past a masters to a PhD or not, have far fewer loans and most importantly, significantly
less stress! If I had continued with medicine, I would be putting my health in a risky back-seat (like all aspiring doctors do, even in the best of health at the outset! Sort of a puzzling paradox, but of course we are all so gratefull for the ones who survive it to be great doctors!) Not to mention the risk of needing to drop out partway through with no way to repay the loans… It was an obvious “no” to me within a month of diagnosis, and I made my peace with walking away from all the work I had done to get myself prepared for that career and all the excitement I had for it. I picked up instead with a search for a better way for me and the real life I must accept (and which am more aware that I am truly blessed to have!)
For me, I have been very fortunate to be diagnosed early in my career development, to have family in a position to support me financially while I really recover and build strength for the long run (in which I plan to work, at a sustainable level), and doctors eager to aggressively treat my lupus and restore function. Thanks to my intentional rest and patience and successful treatment with Rituxan (plaquenil did hardly anything and I couldn’t tolerate CellCept long enough to see if it worked!) I am now feeling nearly back to my old energetic, mentally sharp self on my good days, which are now the majority of the time. I mainly need to be careful of over-doing it in my enthusiasm to be able to “do it” again, and deal with frequent infections due to my immunosuppression. But it is feeling very manageable and I am looking forward very much to success in school (with support from the disability office in preparation for the trouble I need to be ready for with this unpredictable illness) and excited to enter a compatible career that’s still pretty interesting. I suspect it won’t bother me in the slightest to be taking orders or direction from the neurologists I “could have been” myself if it weren’t for my illness, because I will be so happy to have a balanced life for self care and enjoying every minute of life! I also think it will be all the more fascinating for me since I have experienced intermittent disturbances in my speech/language just like Ann described!
I know many of you are not in a similar position of an early opportunity to re-direct career plans (though there are of course downsides to being 25 and knocked out of life for a year with expectations of many tough years to come… No point in life is a good time to be hit with this cruel mystery of a disease! And my family’s support financially has come with crushing criticism, blame, resistance and rejection all throughout. That’s one of the most stress-relieving parts of returning to self-sufficiency, to be free of their double-edged swords!) However, I do believe there are always opportunities for creative re-shaping of life at any time. Maybe it will be a tough road to re-invention, especially with existing family and financial responsibilities, but keeping the belief that you can open new doors when others are slammed in your face can make a huge difference in your perseverance and even enjoyment of the new challenge! If you can’t work for a time, put yourself to work finding new satisfaction or opportunities. And always remember that taking care of yourself and your family is very difficult, important and admirable work in itself. We certainly must fight to be happy with each moment of our lives even in the uncertainty of what’s next… But that’s true for everyone and we just learn it harder and also better. I hope you can put that learning and sense of alternative possibilities to use!
Brynn
Brynn,
I'm glad you're keeping an open mind, and looked for alternatives. I was diagnosed a year ago, and I'm searching for part time to return to work. Staying flexible to manage stress, and take care of ourselves.
i was diagnosed in 2000 even then looking back I had it about 5-10 before but was not diagnosed just given antibiotic after antibiotic and finally I was really weak and tired and hurting all the time for 4 months and they finally diagnosed me, but to get back to the question I work up until 2 years ago when I run myself to the ground doing Nursing'. BUT Iam 56 years old so maybe it was timew to set myself down, don't get me wrong I miss work and sometime get depressed at seeing others in the hospitals, doctor's office and so far, You just have to take one day at a time. God Bless you and keep you.
Yes taking one day at a time is what we have to do. But sometimes we make the plans of enjoying the things that we have to give up ad do them anyway knowing the flare will come out ! So be careful and don’t over due things okay??..Beverly L.