Let’s face it, in today’s society we are all still suffering from post-partum-economy-crash-oh-my-god-I’m-gonna-lose-my-job-fears from the early 2000(s). Some of us still have nightmares from when we were laid off from large down-sizing initiatives. I worked in the mortgage industry…it crashed hard and I felt the pain…twice. I was laid off 2 times. But I was able to learn from this experience and learn to develop better “best practices” for communication and increased job performance. I still fear getting laid off …every day.
Now, add on an additional layer of fear…how do I tell my employer that I have Huntington’s Disease and not make them subconsciously “freak out”. How do I build a trust with my employer and let them know that I am committed to doing my part to stay healthy and productive?
With the GINA Act (Genetic Information Nondiscrimination Act – in the US), we are protected from being laid off because of our genetic information. But how do you explain the scenarios that arise when your symptoms are causing inappropriate or incapable side-affects that may otherwise have you fired?
Think about the following:
If I can’t focus long enough to sit in a 3 hour meeting, how does that make my colleagues feel?
If I am making inappropriate sexual remarks (just to be funny) at the wrong place and time, how does that affect my surrounding co-workers?
If my boss notices that I can’t complete projects on time, what kind of difficult position is he/she put in?
If I can’t hold a scalpel steady when I am performing brain surgery, how is that going to hinder the outcome of my patient’s recovery?
These are some difficult questions and this is a very touchy subject with many people. But here I go…I’m gonna lay it all out on the line.
If you are diagnosed with having a higher than normal CAG repeat or you are at risk, you are responsible for the way you manage your career, your symptoms, and for the education of those who will have to work with you.
You are still allowed to have a career. You are still allowed to have goals and continue your education.
You are responsible for educating your employer and co-workers on Huntington’s Disease when the time is right.
There’s no way around it. You can’t expect people to just know what it is or what you are struggling with. You also have to understand that there is a limit to what an employer can have you do in the work place if you are struggling. But the way in which you communicate and show your genuine desire to continue to work for your employer will better your chances of continued employment.
So how do you know when the time is right?
- If people approach you on something you did or said that made them feel uncomfortable and if this happens more frequently than just normal everyday bullshit office politics.
- If your job performance review reflects comments that show that you are struggling in areas where you never had problems before.
- If you are put on a probation period or you are demoted, you might have waited too long. This is especially true if you haven’t taken the effort to communicate and educate.
- If you are sleeping on the job or constantly late for work.
How do I conjure up the strength to tell them?
What do you have to be ashamed of? You are a genetic anomaly. You are special. All right, I’m being a little silly. However, you should be able to look someone in the eye and say “I have a higher than normal CAG repeat and am at risk for developing Huntington’s Disease. What that means for our working relationship is…”
This is all situational because everyone is unique but this is what I might tell my employer at my stage of the game:
I have a hard time multi-tasking
I have a hard time staying focused
My balance is not great
My memory is poor
I have a hard time communicating or finding the right words to say
I get antsy sometimes in meetings
My driving privileges will be revoked at some point in time
**please note that a job interview is not the right place to share HD info unless you have chorea**
The key to your discussions and the source of your strength should not be in the explanation of the symptoms of Huntington’s Disease but instead of how you handle or intend to handle these symptoms. This is where you build trust between you and your employer. You also have to be very genuine. Don’t fake it. For example, I would say “I have a hard time multitasking. I have worked with my doctors to be placed on helpful medication and I feel that I am performing quite well. I am always open to feedback and am willing to do whatever it takes to get back on track again.” If you “fake it” or don’t really intend to follow through with what you are saying, your performance will show it…your employer will comment on it and after a number of times you will finally lose that trust.
How do you incorporate a “stay in the workplace for as long as I can” maintenance plan?
Politely request job performance reviews or something similar. Some employers do not have a formal review process but you can ask them to give you periodic feedback of how you are doing. A quick email sometimes is just fine. Once or twice a year. Your employer will appreciate your ability to take constructive criticism.
Share your job performance reviews with your doctor or care support…therapist, clergy etc. This gives them the opportunity help you tweak your healthcare plan.
Follow through and document. This is very important. This is important for proof that you are trying to work through your symptoms. Most importantly this is necessary when trying to qualify for long term disability/social security benefits.
Be proactive and knowledgeable of what may happen to someone with Huntington’s Disease. This way symptoms won’t take you by surprise and it will be easier to cope with them.
Share ways in which your employer can help you adjust your environment so that you are safe and productive (adequate lighting/desk free of clutter/minimal distractions/move to first floor workspace).
How do I educate them on Huntington’s Disease?
Some people take information best in small doses. Just don’t jam the info down their throat. This may take a few months…a few years even. It is also important to show them where they can get “the correct” information. Whether it be on-line through HDSA or another quality organization…make sure that they are not shooting through YouTube videos watching somber images of people really badly afflicted. This could send the wrong message. You can suggest that they attend an HD educational event. You can suggest that someone you trust come out to speak with them. Don’t be upset if they decline your offer, however be upfront with them that you think your working relationship will be strengthened if they have a good understanding of what the disease is. I personally had my boss attend a Celebration of Hope Gala where I was presenting. I think it really impressed her and was a great way to show her the wonderful things we were doing to help find a cure.
How do I ensure them that I am not just using HD as an excuse?
My passionate and genuine communication with my employer has been the best route for me. If you are noticing that your employer is complaining over and over again about something that you are constantly saying “well I struggle because of my HD”. There is a problem here. Either they are not listening to you and have not taken this responsibility off your plate or you are not being real with them. You are not doing your part to manage your symptoms and have instead just relied on “the excuse”. This puts a negative strain on your professional relationships and can end very badly for you.
What if I get “shut down”?
Sometimes people can be assholes. I’m sorry but sometimes you have to face the facts that not everyone will be willing to work with you. I suggest that ultimately, you build some kind of relationship up with your co-workers/employer. You will be the best person to judge whether or not they will handle the news well. You never know though until you try. Compassion comes from the most unexpected places.
How do I cope when I really have to step down?
I’m frightened of this part. I don’t know how I will feel when I am told “Mackenzie, we just can’t have you doing what you’re doing. You’re making too many mistakes and it’s affecting the organization in a bad way.” I have nightmares about this at night. The last thing I want is to be “the heavy”. I do know that I’ve built a lot of wonderful relationships at work through many different departments. I am hoping that they will have a fit for me throughout my various “Stages”. My method of coping will be that I know that I did what I could to stay healthy and productive for as long as possible.
Thank you for reading. It’s my peers that keep me going…especially when I have to write about really hard topics. I know that we are all in this together.
All my best,