Chaya Rusk
August 10, 2017 11:11 am
Chad Springer / Getty Images

Picture the perfect Millennial employee. Does the idea of a “tireless,” youthful creature with “inexhaustible energy,” “no personal commitments outside of the brand/organization,” and “no sense of salary worth” make your heart flutter? If so, you should know that the chronically ill folks in your hiring pool experience a complementary dropping of their heart. While the job market is beside itself with desire for this ideal cryptid, those of us who are young, professionally ambitious, and chronically ill face a set of challenges that render many of us mute.

I’m an interstitial cystitis (IC) patient, and I recall the first time I repeated the name of my condition back to my cold urologist, dignity absent in half my prep school uniform and a paper sheet. Even after an agonizing cystoscopy with hydrodistention (a procedure quite like filling party balloons, if the party involves anesthesia and the balloon is your bladder), she thought me hysterical. I was told to make “lifestyle adjustments,” including a restrictive diet, reduced activities, and a variety of medication trials. Otherwise, it was time to step back into my world with the distortion of a chronic pain condition and little relief.

I began to measure the distance between who I was before IC and my new reality; then spent many years flat-out denying that I had to reevaluate and adjust. When I got to college, peers weren’t leaving the lecture hall six times per meeting for the bathroom, or spending most of their time trying to cope with a disorder that’s anathema to college’s competitive pace. I felt frustrated that my invisible illness wasn’t hidden enough for me to fully blend in, but I gained back some control in my postgraduate life by choosing who I explain myself to and the context I do so in.

So how do you meld that manic-pixie-dream-employee image with telling your boss that you pee upwards of forty times a day? The problem is that the performative idea of a young person creating a “brand” (that is, melding their “fun” side with their work life, and effectively leaving no room for non-work life) is just that — performative, even for healthy youngsters. For chronically ill emerging professionals, meeting the standard expected of their peers while grappling with an illness is often not worth explaining the illness to unempathetic (or openly hostile) superiors.  

The key to appearing “young” to your employers is in always appearing accessible and replete with energy, and chronic illness can and will do everything to undermine this artifice. Since your working life will likely be much longer than that of the healthy friend we all have, who is working eighty hours a week to be independently wealthy at thirty, here are the three conversations you’ll have to master if you’re ambitious and sick *all* the time.  

Tips that apply to all conversations:

▶︎ Remember, your privacy is your protection and it is *always* your choice to disclose.  

▶︎ Taking notes or recording (according to consent laws in your state) is an excellent tool for accountability and clarity on both sides.

▶︎ Know the law in your state. For instance, sick leave is not provided federally but may be at the state level. The Equal Employment Opportunity Commission has some excellent resources here.

▶︎ *You* are the final word in your illness. You *know* if it is severe “enough,” and “real” enough. You’re valid, even if it seems like you’re perpetually justifying yourself.

One: The giant, hideous disclosure conversation with your direct superior.

Alright, so you’ve decided to disclose your illness. It’s probably the least desirable conversation you’ll drag yourself into in your professional life. You may worry that you’re already young and female (two strikes against your legitimacy), so what possible worth will you have if you disclose? Let’s be real: A lot of employers *will* estimate your worth differently. It’s not right, and legal protections exist if repercussions arise from disclosure, but it’s an unfortunate truth that most of us will comically overcompensate under employer scrutiny. The one comfort is that perhaps with your disclosure and seemingly magical ability to still do good work, you might help shift the workplace productivity cult to include people with diverse health profiles.

▶︎ Be aware first of what proceedings it may trigger in your workplace. Medical accommodations may become available to you, which should generally just help you perform your job more effectively and comfortably. However, additional scrutiny may come into play, so it’s worth investigating in your employee manual or HR system.

▶︎ Know the extent of what you must disclose. Start by only disclosing functional limitations in direct relation to your job responsibilities. Some superiors get squeamish about illnesses, and in most cases, you don’t have to name your condition at all — just how it affects you at work.

▶︎ Ask for a frank conversation about scheduling and sick time in the new context of your disclosure.

▶︎ Ask for mediators! If there is an HR team, ask for their presence. If there’s another team member you think would benefit from being looped in, invite them! More ears mean more accountability if you trust the people you’re sharing with.

▶︎ Thank the disclose-ee for their time and whatever work they must do in light of the disclosure. Don’t apologize for your illness or assume they feel inconvenienced — most people with flowing blood will probably just feel concern and sympathy. Ignore or circumvent the goblins who show pity, disdain, disbelief, or even (sigh, yeah) revulsion.

Two: Disclosure, voluntarily, to other stakeholders in your professional life (team members, clients, board members, etc.).

If you’ve ever had that weird “Oh I’m so sorry, your life must be so horrible, oh my god this is such bad news” overreaction when you let someone know about your chronic illness, you’ll become hesitant to tell people. The simplest way to maintain control is to, of course, not mention your illness unless absolutely necessary.

▶︎ The first step is to set your own boundaries. Do you feel empowered once you disclose to someone, or do you prefer to guard your privacy more closely? Knowing where you stand will allow you to make more judicious use of your ability to disclose.

▶︎ Control the conversation. Start out by letting the person know that you just want to mention something, and whether or not you are open to having a longer conversation or giving more detail. In some cases, you might find a great opportunity to be an advocate for your illness by educating them. In other cases, you may wish to mention it as an explanation, wherein you don’t even have to name your illness but use some euphemism like “extended illness” or “chronic concern.”

▶︎ Be clear that disclosure to one person does not mean your illness is common knowledge or to be discussed in the workplace.

▶︎ Define your purpose for disclosing. Is it to explain an absence or scheduling conflict? Is it to bond through the act of disclosure? Once you know what it is, you can explain what extent of engagement with the illness you find appropriate for that particular relationship. For instance, if you can’t stretch to reach a shelf and you ask a coworker for help, you might give some detail about your illness to avoid just seeming lazy or (always the worst fear) the assumption that you are exaggerating limitations. However, if you’re addressing a board member or a room full of them, your boundaries might dictate acknowledging a chronic illness and nothing further.   

Three: Conversing with your doctor about a livable treatment plan.

Refrain from screaming “GIVE ME MY LIFE BACK.” If you’re an achiever and an illness is protracted and intractable, you have to communicate that you will comply with a treatment plan that improves your quality of life and overall function. Many healthcare professionals expect you to accept your enfeeblement and submit to multiple drug trials, experimental therapies, or (we’ve all heard it) try some yoga!

▶︎ You have to be clear that high functionality is a huge priority for you. Treatment algorithms are not set in stone: If a course of treatment is beyond the time or life-quality commitment you can make, speak up! Just because most patients try out one therapy does not mean it will be a good fit if it interrupts your professional life.

▶︎ You must develop a rapport with the front desk staff for all the administration of records, prescriptions, appointments, and procedures that constitute having a chronic illness. My boyfriend calls my illness my part-time job because it takes such a time investment outside of my real job and actual life to coordinate. Oh, and remember that front desk staff and nurses are stressed-out people, too. Sincerely ask how their day is — they’re a part of your healing/surviving process.

▶︎ Be open to a holistic approach. Chronic conditions are generally referred to as chronic because they’re incurable (though the National Health Council says it’s anything greater than three months in duration) and unclear in origin. Be willing to try different doctors or methodologies if you have the energy to devote to it. If you find that the reviled “try yoga” thing actually works for you, do it!

▶︎ Be collaborative. It takes time to find providers who are open to engaging you fully in the process of maintaining your health, but when you do, hold on tight.  Find someone who understands your drive and how deeply inconvenient it is to spend the day before an interview “prepping” by trying to read on your iPad while gently throwing up over the side of the bed. They will likely have connections within the healthcare community that can be fruitful for you. For instance, my doctor connected me to a pain specialist who is totally on my team and understands the particulars of my illness. Having a cheerleader who can guide you through the unpleasant process that is having a human body is a wonderful thing.

Let’s keep in mind, too, that being a member of a marginalized community like the chronically ill or disabled does not grant an exemption from the challenges of being a member of the LGBTQIA community, if you will face racial discrimination, class bias, or any number of other obstacles. Chronic illness is intense, but if you’re motivated and just want to produce good work, your intensity will triumph.

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