It never gets easier. Each time I have to tell someone new about my husband’s condition, it seems like I go around in the same circles, trying to fully explain what Marfan syndrome is and what it means for us as a couple. Each time, I feel as though I’ve failed to adequately put into words what exactly we’re up against. And of the many uncomfortable conversations I’ve had to have over the years, I can honestly say that the one I still struggle with the most is the one I have to have with my boss whenever I need to update her on the current status of my husband’s health.
I realize that upon first reading that sentence, it may seem a bit bewildering – why on earth would I need to discuss something as private as my husband’s health with my employer? After all, they’re my employer, not his. Well, the truth of the situation is that nothing happens in a vacuum, and I feel that’s especially true when dealing with a chronic medical condition like my husband’s disorder. We’re very much a team, and every single thing that happens with his health, both good and bad, affects me in some way. Sometimes it’s a little thing, and life goes on with barely a ripple. Other times, it’s a tidal wave, and I need help in order to keep our ship upright.
In the nearly ten years since we’ve been together, I’ve had more than one employer, and I’ve learned a few things about how to approach the sometimes-sticky subject of having a disabled spouse with them.
- I’m always very open and honest with my boss when it comes to my husband. I recognize and am eternally grateful for the fact that I work for an outstanding employer who makes every effort to create a wonderful work/life balance for their employees, and so the conversations are less painful than they were at first. I provide as much detail as I feel is necessary, such as an unexpected hospitalization, so that I can feel confident that we’re on the same page, and expectations of what I can and can’t do are the same on both sides of the desk.
- I always give my boss advance notice whenever something is happening that’s going to require me to be away from the office – when I know ahead of time. For example, my husband and I are currently in the middle of meeting with his spine specialist to determine whether or not it’s time for another fusion. If we get word that it may be time for the surgery, I will update my boss with that information as soon as I can, even though we may not have an actual surgery date scheduled just yet. I like knowing that I’ve done everything I can to keep my potential absence from causing a disturbance in the workflow, and my boss appreciates the extra time to plan for my being out of the office.
- I make sure to keep my HR manager in the loop at all times whenever I do have to be out of the office to care for my husband, especially when it’s an unexpected absence. Obviously, this depends on the specific employer’s preferences, but I’ve always found it helpful to keep the HR manager informed as well, so that remembering to record my absence doesn’t fall only on my boss.
- As I previously mentioned, I have a wonderful employer, and so don’t worry too much about possible repercussions from unexpected absences and the like, but I’m fully aware that this is not everyone’s experience. To that end, I’ve also found it important to know my rights and responsibilities as an employee. How many days of paid time off do you have available to you, if any? Are you able to use it whenever you need to, or do you have to give a few days’ notice before scheduling time off? If you have sick time and you use it up caring for your spouse, do you have the option to possibly use any available vacation days as sick days? What about a leave of absence, in the event that you’ll need to be away for a length of time? Consider the Family Medical Leave Act (FMLA); is your employer required to participate and, if so, can you use that to schedule time off if needed?
As uncomfortable as those questions may be to ask, in my experience, they do tend to pave the way to an easier time of it should that day come when you need to be away from work to care for your spouse. I’ve found that my employer appreciates the effort I put into making sure I had the information I needed, and was as prepared as possible for any eventuality. While I can’t say it ever gets easier, or less awkward, it has at least made me feel better-prepared and somewhat more at-ease with the situation. I have to keep moving forward, though, and I have hope that one day when I go to give my boss an update on my husband’s current health status, it won’t be such an uncomfortable conversation.
Kris Knauf lives in St. Louis, MO, with her husband, who has Marfan syndrome, and their three kitties. Her husband is the only one in his family with the disorder, and it seems as though every day they learn something new about life with Marfan. She is a paralegal at a fantastic firm in the city, and a member of the Foundation's Writing Group.