That's a interesting phrase... "Don't put me in a box." It was meant to convey resistance to conformity. But it also makes a more subtle morbid suggestion, that some might, by deciding you are "done" because of a disease, also put you into a (pine) box (metaphorically, of course).
In other words, when you receive a diagnosis of MS, it's bad enough that you are confronted with your own personal mortality. But tell your friends, family members, acquaintances and they will often, without even meaning to, decide to either put you in a metaphoric Disabled Box (even though you may not have any outward evidence of your condition) or break out in tears and grief because they clearly think your life is over and you are headed for none other than the metaphoric Pine Box.
I thought a lot about this today because I am anxious about revealing my diagnosis to my boss, my coworkers and others who I work with as part of my job in the allied healthcare field. I haven't told anybody anything because, first of all, having MS for me does not mean I am disabled or will be disabled any time soon. I do not have any need for accommodations at work; I just got my job review and it was all good.
Still, it's hard to carry that information around with you and not share it. Or at least it is for me. Others, I know, would rather just bury it and never talk about it again. I understand that impulse too, though it's not my style. I'd rather just put it out there and move on.
Except I've learned... sometimes, when I put it out there, I might be able to move on, but others who don't know much about MS might not be able to. Some of the kinds of changes I've noticed in the behavior of friends and families include:
- A nagging sense that they believe you are weak, or frail, or incompetent now, even when there is no outward evidence of this. Note: Disabled people get this vibe from their functioning peers 24-7.
- Disbelief on their part, either bundled with suspicion that you're faking it, or just general inacceptance of your DX. Note: Disabled people get this vibe from their functioning peers 24-7, as well.
- A kind of mourning every time you encounter them, like they are afraid for your life and gush with more than their typical positivity because, maybe, they think you are inches away from dying even though, truth be told, you might actually feel a lot better now than when you first told them about your diagnosis. Note: Disabled people ALSO get THIS vibe from their functioning peers 24-7.
- Forgetfulness. You are moving on. They may or may not think you are sick, or cured. They have simply forgotten this is something you deal with 24-7 because it is an invisible illness. Disabled people with invisible symptoms also totally understand this challenge.
I was thinking about this today because I had a meeting with some of my cohorts, and one of them (I'll call him "Joe") in particular has set his sights on grooming me for a bigger role in this organization we are developing. Part of me is all "Awesome, I have a great opportunity here not only for my career but to work with people who share my passion doing things that make the world a better place!" And then, part of me is all "But what happens if my MS progresses and all this faith Joe has placed in me will be wasted if I then have to bow out of commitments because I am too sick to fulfill my duties?" And then, yet another part of me is all "But if I tell Joe now, it might mean he stops having so much faith in me and begins to believe I am weak, or frail, or incompetent" (see point #1 above).
While it bothers me that my family is sometimes guilty of point #4 (above), that is a separate recurring concern in the workplace, that regardless of the truth, Joe might still expect me to take on challenging tasks that I might not be up for, forgetting I have some limitations because MS is so utterly invisible for me. Then I would have to bring it up to Joe, again and again, like my family, so that they could realign their expectations. You know, I don't want to be that kind of cohort in the professional realm. I only want Joe to know and trust and respect me for my ideas and hard work and heart. I don't want or need sympathy from him.
So when I left to go to this meeting this morning, I was thinking, Hmmm, maybe I should just tell Joe my secret after the group meeting, a secret which burns a hole in my conscience like money burns a hole in one's pocket. And I practiced how I would break it to him, and felt good knowing he would keep mum. I know he has placed a lot of trust in me in my role in this developing project, and I don't think he would reveal my secret to anyone else in the field.
And then we had our meeting and I ROCKED IT OUT. I was articulate, my ideas were smart and accepted by people much smarter than I am, and they all thanked me for my particular contribution of awesomeness (which is in tracking communications for the team).
So I didn't say a word to Joe. Why should I? What would I gain except that the hole in my conscience would stop burning? Regret can burn a hole in one's soul, too, and today I felt like it would be a mistake to say anything, that it might even lead me to a whole boatload of regret.
I don't know about you, but I don't think living with regret is a better substitute for carrying a secret which, if not revealed, may never negatively impact anybody else in any meaningful way.
But it's still hard to carry around and I'm so grateful that I have so many friends and family in my life who are great about listening and inquiring and showing their support and not treating me like a leper for it!
As for points #2 and #3, I've had some experience with both... Disbelief among peers in specific circles that I've had to leave because my involvement there was more or less optional and the stress level was more than I wanted to manage then or now or ever. I don't think I have run across anyone who thinks I'm faking it, though I hear these horror stories from fellow MSers all the time. And I've had a couple of friends who responded immediately to news of my diagnosis with tears and fear and horror. It's sweet of them, and I love them for caring so much. But every time I see them, I can tell they are wondering how much time I have left. My neuro said the odds, of me living out my life actively and to the extent of my assumed nonMS life expectancy, are overwhelmingly in my favor, and I've shared that with these friends who I think of (archly, and only to myself) as loving undertakers. My hope is that time will ease their fears and they will see that hope is the real engineer behind everything I do.
Just a quick note: most MSers are advised by legal counsel to not reveal their condition during a job interview and to be very judicious about sharing that information with coworkers or your boss if you are diagnosed while actively employed, especially if you do not show outward signs of mobility issues or other deficits that could impact your job performance. However, once hired, some employers have HR departments that WILL ask ALL of their incoming employees specific questions about preexisting health conditions (hospitals are one such kind of employer) because they need this information in order to serve everyone's needs for job accommodations etc. Still, HR is forbidden from sharing this information with your boss or direct supervisors or coworkers thanks to the ADA and, to some extent, HIPAA privacy laws. Suffice it to say, HR knows about my condition, but when I told them, all they asked was whether I needed any devices to perform my job, and then, because it's a medical employer, they were caring enough to ask me how I was doing. When I told them I was taking (and tolerating) my meds and feeling great and shared the positive notes my neuro had regarding my prognosis, that was the end of the conversation.
If you are an MSer and you struggle with disclosing your condition, especially in your work environment, because you fear for your job security, you can check out all kinds of resources through the National Multiple Sclerosis Society. The article, "Should I Tell?", is quite instructive and while it reveals how complex it is to be an MSer in the workforce, there are lawyers at the national and state levels who can help you decide how to move forward with revealing a new diagnosis at your current job or how to answer touchy questions about your health during the process of landing a new job.
