If you’ve read any of my recent posts, you’ll know that I’ve been on medical leave from work since the winter holidays. Unhappily. I never imagined that I might have to – even temporarily – abandon my career, my dream job, and my educational plans – because of a broken arm.
A simple fracture, a snapped radius, triggered a rare autoimmune and neuro-inflammatory disease. Ironically, the fracture itself healed well; I didn’t even require surgery!
I was diagnosed in mid-2016 with Complex Regional Pain Syndrome (CRPS), although I was first told that I had Reflex Sympathetic Dystrophy (RSD). RSD is the old name for CRPS, which can lead to some confusion for new patients.
Until just before the winter holidays, I’d thought my disease was stable. My specialist team and I were continuing to search for effective treatments for the multiple symptoms of CRPS, so I had hope that my condition would improve. Instead it unexpectedly worsened, with the onset of new symptoms.
The new symptoms were mild cognitive impairment (MCI); I was having problems with concentration, focus, and short-term memory. When I went on medical leave, my physicians discussed potential new treatment options with me. We talked about interventional medical procedures, medications, even surgery.
We agreed to delay any change in my treatment, so that I could participate in an upcoming clinical trial. This research project addressed one specific – very painful – symptom of CRPS, and my specialist and I had very high hopes. Unfortunately the combination study medication didn’t help.
Our next step was to consider surgery, called neuromodulation or spinal cord stimulation (SCS). This seemed to be a good option for me; better than the other potential new treatments, all of which could increase my MCI.
By the time we’d finished evaluating the surgical option, we were approaching the end of my short-term disability period. After almost 6 months, we’d realized that there didn’t seem to be any viable treatment for my MCI. This meant that I wouldn’t be able to return to my dream job.
At that news, I was so distraught that the psychology team – within my university-hospital multidisciplinary pain management unit (PMU) – had to be involved in my care. Not for a depression, although that does occur frequently in CRPS patients, but to deal with stepping away from the career I’d worked so hard for.
More than 10 years of night school, to complete my degrees, while working full-time. Then all of the effort and time I’d spend building my career. Gone. After more than 30 hours of psychological assistance with my PMU, I’m still struggling with not working.
My fields – biomedical ethics (bioethics) and patient privacy protection – were such an important part of my identity. My work wasn’t just what I did, in many ways I saw it as who I am.
It could be so much worse, I know that. I have loved ones and friends, I’m still able to do some of the things that are important to me. I don’t have a terminal illness. Despite knowing all that, and truly believing it, some days are really rough.
So it now feels as though I’m in limbo. I’ve lost my identity as a bioethics professional, and I don’t want my identity to become solely “rare disease patient” or “chronic pain patient”. That’s not who I am, not how I see myself. And, of course, I’m trying to deal with the MCI itself; feeling somewhat dazed and confused ‘-)
It doesn’t help that I’m also in financial limbo, waiting for a decision on my long-term disability insurance claim. Waiting to find out whether I’ll have any income! Losing my career is difficult enough to deal with, at a psychological level, without having to also worry about whether my husband and I will be okay on the financial side.
My apologies if this post seems like a long and rambling venting session! I wanted to let you know why I’ve been less present on social media recently, including here on the blog. I’m still the same generally happy and optimistic person I’ve always been, but this has been a really rough time.
It would have been dishonest, and a misrepresentation of my patient journey, not to write about this. If you’ve kept reading ‘til the end, thanks so much for sharing this journey with me!
I disabled the comments function of the blog as part of the site update, because I simply couldn’t deal with repeated spam attacks from overseas. I’d still love to hear from you, so feel free to reach out on Instagram or Twitter. You should be able to connect through my feeds, on the right side of the blog page ‘-)