Taking invisible disabilities out of the shadow and into the light
Laken Dineka has suffered from sickle cell disease since birth. Now, as a Fund Administrative Officer at Ardian, she talks about her battle against this illness, which is invisible at first glance. Obtaining Recognized Disabled Worker Status (RQTH*) has been a huge help to Laken, by removing the need for her to stay silent about her condition and enabling her to do her job with greater peace of mind.
Laken Dineka is a self-possessed young woman with bright eyes and a broad smile. She has worked for almost five years as a Fund Administrative Officer at Ardian, where her duties include managing financial information, entering and analyzing fund investment flows, monitoring cash reserves, reviewing and managing recommendations on portfolio payment flows, and participating in different initiatives, including a recent business digitalization project. In other words, she’s a busy lady.
But behind the confident, fun-loving attitude, Laken carries the heavy burden of a chronic illness: sickle cell anemia. It is a disease that can strike without warning, leaving the patient exhausted and bed-ridden. It is invisible, but severely disabling. “It’s a hereditary, genetic blood illness that causes red blood cells to become misshapen. Instead of being round, the cells are shaped like a sickle, hence the name,” explains Laken. “This results in poor blood circulation, which can trigger vaso-occlusive crises. These sometimes occur without warning, especially during cold spells, and are terribly painful. The only way to get relief is to go to a specialized medical facility.”
Diagnosed at birth, Laken spent her childhood and teenage years at the mercy of the ups and downs of her illness. But neither the countless medical appointments nor repeated hospital stays dimmed her determination or put her off her studies.
Once she entered the workplace, however, Laken did not feel able to reveal her disability, which is totally invisible to everyone, from coworkers to managers. Although she occasionally had to take lengthy sick leaves, Laken managed to avoid the quizzical looks and indirect questions.
Genetic illnesses like sickle cell disease cannot be seen. Entering the world of work comes with lots of questions and trepidation about how you might be perceived.
“Would I be accepted for my skills, despite sometimes having to go suddenly on leave for lengthy periods, even though everything seems fine?” says Laken.
For years, Laken pretended that everything was fine. But one day, after a particularly challenging period, her hematologist spoke to her about Recognized Disabled Worker Status (RQTH). “When a disease or disability is invisible, you are in its power. You’re always covering up and stressing out. Having this status has been a huge relief and allowed me to be open with my employer, my manager and my coworkers. It means that I can anticipate and explain my absences, and organize myself with more peace of mind."
Ardian is the first employer with which I have had the trust to talk about my disability and status.
She submitted the request for RQTH status to her local Disability Center (MDPH), and after a year’s wait, her application was granted.
As she was not duty-bound to inform her employer about her status, Laken did not feel ready at first. It was only when she joined Ardian that things clicked for her. “I spoke to my manager about it during a one-on-one, before I had completed my trial period, because I wanted to be totally upfront. Sickle cell disease is a long-term illness, and I wanted my boss to understand what that could mean. But my manager supported me and sent me to HR department. I took a lot of confidence from seeing how Ardian tackled these issues. Even so, I didn’t want to tell my coworkers straight away, probably because I was still a little fearful about how they might respond.” A few months later, Laken decided to tell her coworkers.
We were doing a team-building session. I had prepared my presentation with the event organizer. We played a get-to-know-your-coworkers game. When my turn came, I told them about my illness and status. They were surprised, as they had no idea, but also very understanding.
Freedom, peace of mind and self-esteem
Freedom, peace of mind and self-esteem
In addition to informing the employer, having RQTH status comes with entitlement to workstation and working time accommodations. “I use a footrest due to my poor blood circulation, and I have a special ergonomic chair at home,” says Laken. “I can work from home whenever I need to, and especially when the outside temperature goes down, which is when crises most commonly happen. My manager knows and understands that because I get tired, I may have to work shorter days, but that I will make up the time later from home.
I am more effective now, because I no longer carry the day-to-day mental burden. I have much more peace of mind.
In her daily life, having RQTH status also means that Laken can move to the front of lines, get a seat in public venues or enjoy easier access to certain training opportunities.
“Before I was able to talk about my invisible disability, I was embarrassed. I felt less able than my coworkers because my disease was holding me back. But Ardian has provided me with support and made me comfortable with my disability. I don’t feel like an outsider. Everything is done to make sure that people with disabilities are not forgotten about. We are lucky here in France to have systems that support people with disabilities. There is no shame in taking advantage of them. Whether their conditions are visible or invisible, people with disabilities are an integral part of society and of the companies that hire them. Anyone with an invisible or visible disability should not hesitate to inform themselves and start the process of obtaining RQTH status and taking advantage of all the resources on offer!” stresses Laken.
While she is more at peace now, Laken still has her combative edge:
We need to communicate more about disabilities. There is so much to say and do.
"I want to get involved in building awareness not just about my own illness, but also about the fact that people around us, including our own work colleagues, might be suffering from an invisible disability. And that doesn’t need to be the case. Coming out of the shadow and into the light can be life-saving!”
* Administrative recognition existing in France for employees with disabilities.