I have an undiagnosed autoimmune disorder, along with depression and anxiety. Depression and anxiety may be the result of the disorder, though whether they’re separate diagnoses or just the outcome of living with pain, no diagnosis, and the constant exhaustion of advocating for oneself is hard to say. My physicians have suspected some autoimmune dysfunction for a long time and I was scheduled to start more serious investigations right before COVID hit, so those are put off for now.
How it affects me is mainly that I’m in pain, and tired, nearly all of the time. Few people realize this about me because I’m fairly extroverted and extremely good at hiding my illness. I perfected this ability during graduate school.
What are the strengths and challenges of being a genetic counselor (GC) with an undiagnosed disability? What do I need for equity and inclusion in the profession?
Let's talk about it!
What strengths do I have because of my disability?
I know what it’s like to be a “professional patient”, to have an undiagnosed illness, and to experience diagnostic overshadowing (since I have episodes of depression, those must be the root cause of my physical symptoms, at least in the eyes of some providers).
I know what it’s like to live while concealing what you are going through and how exhausting that can be. I know what it’s like not to be believed, so I always try to hold space for patients to let them freely explain what their experience is like and what they think the cause is.
My experiences have made me a better genetic counselor. It did take me a few years in therapy to get over the trauma of my training, however, and arrive at a place where these experiences can make me a stronger clinician. I wouldn’t have been prepared to see patients straight out of school, without some work on myself to process and reframe what I went through.
What challenges did I have in grad school and now as a disabled GC?
Grad school
My program told me that there was no way I could have any kind of accommodations such as a leave of absence to recover from an exacerbation of my condition; it just wouldn’t work with their program so I should consider dropping out. It wasn’t until I saw a physician who told me otherwise, that I actually sought time off. He was a graduate of the same university and said I was entitled to leave and gave me the name of the Disability Services officer to contact.
My program was reluctantly forced to comply with university regulations and I was given extra time to complete my degree, but I was instructed not to let anyone know. If I had to leave clinic early to see a specialist, I was advised to say I was going to a meeting about my capstone project.
This caused me a great deal of anxiety (what if someone sees me going to the rheumatology clinic?), doubt (what if I’m not good enough to be a genetic counselor?), and shame (what if I let down my program?). It also made it hard when I was struggling in clinic since I couldn’t say what was really going on. I couldn’t say I was tired and in pain, so I think some of my supervisors thought I was maybe lazy or didn’t care.
I got some bad feedback that made me avoid clinical roles for my first few years out of school. I will never forget when a supervisor gave me a passing evaluation on paper but privately told me, “I hope you have some other skills, because you are never going to be a genetic counselor.”
Profession
There is a lot of ableism, whether it’s in lectures talking about GCs as a singular, homogenous group, or always having conferences like NSGC at massive venues with limited accessibility.
Conferences are very challenging for me. There is always a lot more walking than I am really capable of doing and I usually need 1-2 weeks to recover afterwards. Many meetings are either very early in the morning or late in the evening but I really can’t stay awake past 9pm, and the pervasive drinking culture also excludes me because I can’t have alcohol with my medications. I enjoy seeing and connecting with my colleagues but the online and hybrid conferences that have come about as a result of COVID have been so much easier for me. I have been able to get more learning done, rather than collapsing into bed in my hotel room in the afternoon.
I wish other genetic counselors were more aware that they have disabled colleagues and foster equity and inclusion for students and those working.
What do you wish the profession knew about being a GC with a disability?
We are capable of being excellent GCs – especially if we create, or are provided with, an appropriate working environment. I’m very lucky to have found a job that is my desired mix of clinical work, research, and being involved with teaching GC students. I work from home, which suits me very well, because it cuts out a couple of hours of commuting time. Instead, I can use that time for self-care. I have more freedom for things like a nap in the middle of the day to recharge. My best hours are early in the morning so I often get up at around 5am and get a lot of my work done then.
There is a real threat of stigma and discrimination if we disclose our disability. Very few people know that I have a disability (really only my manager). I still struggle with that word, because it was not part of my identity until grad school and I needed it to get accommodations. This isn’t to say there is anything wrong with having a disability, but it was an abrupt change in how I saw myself. I do own the label and the identity now, even if I’m quiet about it. Despite therapy, some fears about repercussions haven’t gone away. It's why I’m writing anonymously.
What do you need to be included in the GC profession?
Understanding and compassion. It seems there is an endless well of understanding and compassion for patients but this is very rarely extended to colleagues. Instead, there is doubt that those of us with disabilities can do our jobs or are capable of taking on demanding roles. I have a rewarding and challenging career and have had a great deal of professional success. I see my career continuing to grow. But I did need extra time to finish my program to take care of my health.
Accommodations. I wish my program leadership had been more understanding and supportive rather than being yet another obstacle because it doesn’t have to be that way. Accommodation is not a lowering of standards - it’s a removal of barriers. What we advocate for our patients should apply to fellow GCs as well.
If you would like to have your experience showcased on the
Dare To Be Aware blog please email: awaredare@gmail.com.
You can be identified or de-identified according to your preference.
NB: Person-first and identity-first language are both used in this blog post. The author did not have a preference and recognizes that people will have different preferences.
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