Hi everyone,
I hope it is ok I post here versus the much smaller caregiver forum. I'm hoping that I can receive more insight from a broader audience.
I'm 36, a scientist by training, and the primary caregiver to my partner of 14 years. Her MS has been very aggressive at times and has impacted some of her ability to be fully independent although she is generally doing very well. When she relapses though, it can be severe. Two years ago she started relapsing back-to-back for 6 months with no end in sight. She went from walking to tripping/falling to walker to wheelchair to fully rigid unmovable legs within a few weeks. Luckily, we were able to get her accepted into the HSCT work being done by Dr. Burt at Northwestern. (I worked for months tirelessly advocating for her in the many hospitals she was at and then finally got so frustrated with her being undertreated that I took to ClinicalTrials.gov to find an answer - in this case Dr. Burt.) She received chemo to destroy the majority of her immune system and then her own stem cells to regenerate her immune system. She recovered, went into full remission, went off of all of her DMDs, and regained the ability to walk with no more leg spasticity. It was like a miracle.
Meanwhile, while we were very fortunate to have the entire procedure and all of her care covered by insurance, I exhausted all my savings paying all of our expenses for over a year without an income. Once she no longer needed 24/7 supervision, I started looking for a job again. It's been nearly a year and I've had few bites. I've tried my field, temp work, contract positions, everything with no luck. In my last interview, I was asked about how scattered my resume was. I am a scientist by training, but moved with my partner for her career because I knew that her employment might be more limited, which it was (disability 2008). So, I took jobs based on where we were, sometimes little science industry/options. And later when she was in insurance limbo, I worked as a manager at a local college that offered same-sex partner health benefits, a hard thing to find.
Now after all these years, I feel I have jeopardized my career a bit by trying to balance work and home. I wouldn't trade what I did, because I love my partner and want the best for her. I just feel a bit frustrated. This is not the first time people seem confused about my work history (lab science, science advocacy, higher ed management, and some additional coursework in engineering sciences). I feel I have amazing skills at research, project management, outreach, communications, etc., but people seem stuck on the trajecory no matter how I restructure my resume. Any advice? Any other people out there struggling with work options? What did you do? Any networking options? I wish I could just get a job from someone in a network of mine who can see me as more than just a sheet of paper...I've been working this hard, but no luck yet. I have so much energy and passion to put into a job, but I'm just spinning my wheels and struggling to support my household.
Thanks!
I hope it is ok I post here versus the much smaller caregiver forum. I'm hoping that I can receive more insight from a broader audience.
I'm 36, a scientist by training, and the primary caregiver to my partner of 14 years. Her MS has been very aggressive at times and has impacted some of her ability to be fully independent although she is generally doing very well. When she relapses though, it can be severe. Two years ago she started relapsing back-to-back for 6 months with no end in sight. She went from walking to tripping/falling to walker to wheelchair to fully rigid unmovable legs within a few weeks. Luckily, we were able to get her accepted into the HSCT work being done by Dr. Burt at Northwestern. (I worked for months tirelessly advocating for her in the many hospitals she was at and then finally got so frustrated with her being undertreated that I took to ClinicalTrials.gov to find an answer - in this case Dr. Burt.) She received chemo to destroy the majority of her immune system and then her own stem cells to regenerate her immune system. She recovered, went into full remission, went off of all of her DMDs, and regained the ability to walk with no more leg spasticity. It was like a miracle.
Meanwhile, while we were very fortunate to have the entire procedure and all of her care covered by insurance, I exhausted all my savings paying all of our expenses for over a year without an income. Once she no longer needed 24/7 supervision, I started looking for a job again. It's been nearly a year and I've had few bites. I've tried my field, temp work, contract positions, everything with no luck. In my last interview, I was asked about how scattered my resume was. I am a scientist by training, but moved with my partner for her career because I knew that her employment might be more limited, which it was (disability 2008). So, I took jobs based on where we were, sometimes little science industry/options. And later when she was in insurance limbo, I worked as a manager at a local college that offered same-sex partner health benefits, a hard thing to find.
Now after all these years, I feel I have jeopardized my career a bit by trying to balance work and home. I wouldn't trade what I did, because I love my partner and want the best for her. I just feel a bit frustrated. This is not the first time people seem confused about my work history (lab science, science advocacy, higher ed management, and some additional coursework in engineering sciences). I feel I have amazing skills at research, project management, outreach, communications, etc., but people seem stuck on the trajecory no matter how I restructure my resume. Any advice? Any other people out there struggling with work options? What did you do? Any networking options? I wish I could just get a job from someone in a network of mine who can see me as more than just a sheet of paper...I've been working this hard, but no luck yet. I have so much energy and passion to put into a job, but I'm just spinning my wheels and struggling to support my household.
Thanks!
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