Nick McRae-Cyr knew he wouldn’t be going into construction like the rest of his family. Instead of a high-impact occupation, because of his
One of his first jobs after graduate school was working with children in crisis at a psychiatric hospital. He was prepared for the position to be physical, but it proved to be more hazardous than expected.
“I was working with students who were often combative and aggressive,” he says. “We wore a lot of protective gear, and we were getting assaulted on a regular basis. I only made it one school year there because I got hit pretty hard once, and it didn’t go well.”
McRae-Cyr wasn’t about to give up on the profession he loved.
“That situation pushed me to find the places in social work where I was less likely to have the physicality and could do more of the emotional heavy lifting,” he says.
His next job, working with homeless youths, was quite a bit safer for him. And for the past four years, McRae-Cyr has been a school social worker and hasn’t had any more incidents with combative kids. But hemophilia still affects his work life.
McRae-Cyr met with his employers to discuss his condition and let them know what he needs to remain safe and healthy at work. Such requests are referred to as accommodations under the Americans with Disabilities Act, and as long as they are reasonable — they allow a person with a disability to perform the same job and enjoy the same benefits as other employees — employers are obligated to comply.
“I always let my administrators know, ‘I have this disorder, and this is what you might notice if XYZ happens. I have to go in my office and be alone for a half-hour to take my medicine, which is an IV injection,’” he says. “Also, I wanted to explain that when I got a bloody nose, that might be a reason I miss a day or two of work.”
Throughout his career, McRae-Cyr has been vigilant about maintaining continuous medical coverage that suited his needs.
“At that first job, the insurance was self-funded, so I was having a really hard time getting coverage for factor,” he says. “Before taking my most recent job, I was on a HealthCare.gov plan, and then I started part time with my employer so I could make sure the insurance coverage was good before I went full time.”
Ryan J. Rushton, a physical therapist at the Utah Center for Bleeding & Clotting Disorders in Salt Lake City, says McRae-Cyr has taken all of the steps he recommends to his patients when navigating the job market.
Rushton and Brenda McLean, a school and career counselor at the Indiana Hemophilia & Thrombosis Center in Indianapolis, discuss some of the top career concerns of people with blood and bleeding disorders.
How Do I Choose a Career?
This is by far the most common question McLean gets, and she likes to answer it with a question of her own: If you didn’t have to work, what would you do for free? Your answer to that question can be foundational when exploring a career path.
“Let’s say someone says they like football, but there aren’t a lot of job openings for football players, and that’s not the best career for people with bleeding disorders anyway,” McLean says. “But we could think about what other jobs you could do that are related to football. Maybe you could work on the business side of things — in marketing or PR. Maybe you want to be a coach or a trainer. There are lots of possibilities.”
Sometimes the trouble in figuring out what to do is not knowing what’s out there. In that case, a career assessment can help. These online tools ask a series of personality questions, then suggest career options based on the answers.
“These assessments are a good place to start in your process,” McLean says. “A lot of times it’s about expanding your thinking and figuring out what your options are. It’s finding that intersection of what do you like, what’s going to be fulfilling for you, and what’s going to match your physical needs.”
Once you’ve narrowed down your options, “then we discuss your educational and experiential background and figure out a way to bridge that gap” so you can qualify for the job you want, she says.
Are There Types of Jobs to Avoid?
Although today’s treatment protocols are much better than they were even a decade or two ago, some jobs can still be difficult and dangerous for people with blood and bleeding disorders to perform. And these are often the types of jobs that people do if they didn’t complete high school, trade school, or college.
“Many times, our patients have to take what’s available, and that’s often the more strenuous jobs like delivering packages, loading luggage at the airport, cleaning, construction, things like that,” Rushton says. “And those types of jobs often are the worst types for the hemophilia patient who might have joint arthropathy or a bleeding elbow or a bleeding knee.”
What Can I Do if My Job Isn’t Good for My Health?
If your job is making it difficult to maintain your health, it’s time to think about a change.
“I know it can be scary, but there are ways to transition into a new career,” McLean says. “It’s not the end of the world to try something new.”
She suggests reaching out to the nearest hemophilia treatment center for career counseling if you need direction on getting where you want to be.
“For instance, say you want to be a nurse, but nursing school isn’t feasible right now,” McLean says. “We might suggest starting with going to EMT school at night and then working up to your nursing degree.”
Do I Have to Disclose My Bleeding Disorder to a Potential Employer?
No, and Rushton and McLean agree there’s no reason to let employers know about your condition before getting a job offer.
“I encourage people to be cautious about the urgency in which they tell people about their disease,” Rushton says. “First of all, it’s none of their business. Second of all, as long as you’re physically able to do the requirements of the job — and you shouldn’t be applying to jobs you can’t physically do — then there’s no need to disclose during the interview process.”
Am I Protected from Discrimination if I Disclose?
Yes and no. Firing a person or not hiring a person because of a disability — which includes bleeding disorders — is illegal under the Americans with Disabilities Act. Discrimination also includes microaggressions, or subtle ways employers alienate marginalized employees in an effort to get them to quit. It can be difficult, however, to prove such discrimination, experts say.
“There are obviously laws against discrimination of disability, but it does still happen,” Rushton says. “And so those are valid concerns that people with hemophilia have, especially considering the disease is still largely misunderstood by the general public.”
Are There Benefits to Disclosing My Bleeding Disorder to My Employer?
Yes, the most important being your safety.
“If you get injured on the job and they know about your condition, it might speed up the process of treatment,” Rushton says. “If you only tell one person, ‘Hey, if there’s an issue, I keep a card in my pocket, and this is what needs to happen,’ that can be lifesaving. It doesn’t even need to be someone in HR or management.”
Another reason to disclose your condition is to ask for accommodations, or adaptations to the job to make it safer or more comfortable for you, such as requesting to sit for a certain percentage of your shift, to work from home when necessary, or to have access to a step stool if overhead mobility is a challenge.
“There are lots of ways people with bleeding disorders can modify the way they work and still get their jobs done,” McLean says. “Sometimes it just takes a little ingenuity.”
Before accepting a job, be sure to find out about the company’s benefits package, specifically the medical insurance coverage.
“Once you’ve gotten an offer, ask for a copy of the medical plan summary,” Rushton
You can even take the plan summary to your hemophilia treatment center for help in deciding whether it meets your medical needs. Details to consider include:
- Policy type (HMO, PPO, high-deductible health plan, etc.)
- Copayment amounts
- Premium costs per pay period
- Out-of-pocket limits
- Whether it covers factor and other medications to treat your bleeding disorder
- Whether your current doctors are in network