Chronic illness at work; navigating genuine “how are you?” questions

Question

I'm a 23-year-old woman in the United States. I have several chronic illnesses that in turn manifest in more short-term symptoms. I doubt all the particulars are actually relevant here (correct me if I'm wrong) but my laundry list of issues generally boils down to daily on-again off-again nausea, headaches, gastrointestinal issues, exhaustion, anxiety and brain fog. I am on treatment plans and actually in a great place health-wise compared to a few years ago, but some days are inevitably rougher than others.

I have the great fortune to work for an incredible startup with very empathetic people doing work I love. They've been very understanding about my illnesses and very forgiving with my work schedule and tasks - suffice it to say I love it here. My coworkers and bosses are all very personable (it's like a big family) and therefore concerned for me.

I often get people (both at the same level as me and above me) at work sincerely asking after my health. On the one hand, I feel they deserve and are actually interested in how I'm doing, and I should, therefore, give a genuine answer. On the other hand, I've been trained all my life to say "I'm fine" and not show weakness; particularly to those who owe you paychecks.

As my issues are chronic I am perfectly comfortable saying "I'm fine" when I'm in a less-symptom-heavy period. I can go for months at what I'd consider baseline health and function completely normally.

What I'm stuck at is some way to resolve the internal struggle I have when I am in a downswing and people are asking me every day or three if I'm feeling any better. The answer is almost always "same as yesterday" until it's not, and I can't always tell if my responses come across as being a downer, looking for sympathy or otherwise subtly begging for time off, less work, etc. Plus I don't want to respond in a discouraging way; the support is amazing and I don't want to in any way belittle or shut them down for genuinely caring.

A typical response I'll give might be something like;

Slightly better than yesterday which is a great thing!

Not too great but I'm getting along. (and then I change the subject)

Pretty bad today so I might need to go home early, but I wanted to come in and make sure I finished xyz task first.

Didn't get the best results on my last test/visit/etc but I'm staying strong!

I try to put a positive spin on things wherever possible so I think it balances out but I'm not sure. As you can tell, I am a worrier by nature.

TL;DR: My chronic illness means I'm sometimes sick for long periods of time (2-6 weeks at a stretch) and my workplace is full of genuinely concerned people. Am I handling responding to their questions of "how are you?" appropriately? If not, how do I answer without outright lying, but also without appearing to be a 'Debbie downer' looking for sympathy?

Answer 1

I think it does not really matter what you mention as feedback.

I assume your colleagues are well aware of the long term positives:

I am on treatment plans and actually in a great place health-wise compared to a few years ago

As well as the short term variations:

, but some days are inevitably rougher than others.

Whatever you say, if you end with thanks for asking you will communicate your appreciation that it was enquired about. Especially accompanied by a big/small/wry smile.

That may actually be the main thing to share.

Answer 2

First of all: People genuinely asking how you feel are one of the best thing that could happen to you.

How I would answer: I'd explain them that you still have a long road until you're over the illness and that it's hard to tell if one day is better or worse - but you feel that generally its better and it gets better every day. Volatility is something normal. If you ask students every day if they think they're smarter than the last day they would get confused too. But at the end of the year everyone can tell how they advanced.

Answer 3

I don't know how feasible it is, but perhaps you could write up something sharing as much about your condition as you feel comfortable, thanking people for their concerns and saying that you do worry sometimes that you aren't sure how to answer when asked certain questions, but you love that they care. And if you like you can share "the spoon story". A friend shared it with me about her multiple chronic health conditions and it really did help me to put it better into perspective how life is for her. I've had a fair share of things, but I also have been fortunate that I have found treatment options that generally make them a non issue. Some I battled for a while first, but eventually found an answer. I am sorry that you are struggling with your health.

Here is the spoon story in case you haven't read it or for others who have never read it. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

This excerpt gives the major gist:

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

Answer 4

I like the spoon story - I've heard that one before and as a person with multiple chronic debilitating illnesses, I think it's pretty accurate.

I've had the same challenge as you regarding how to answer the question "How are you doing?" For me, it depends on who's asking. If it's someone who's just an acquaintance, and I'm having a really horrible day physically, I might just say "Doing a-ok" b/c that's the most positive I can muster, or if I have slightly more mental energy I might say "Well I still have all 5 senses and all my limbs, so it's a good day." or "every day above ground is a good day!" I try to parlay the answer to their question into something slightly humourous without giving any details. B/c in reality, most people don't really care and don't' want the details.

For people who I work closely with or I know pretty well, if they ask "How are you doing today?" and are genuinely looking for an answer, I usually keep it short and sweet, like "Well I'm still trying to get over the pneumonia, but otherwise doing fine. How are you doing?" etc or "Today's my monthly IV treatment but I'll be online working all day." etc.

That being said, I did run into trouble b/c I did such a good job downplaying my illnesses - some people in my office didn't believe I was really disabled (technically I have a physical disability due to the severity of my illness but am able to telework fulltime) b/c I usually kept most of the details from them. So then I was forced to explain everything in depth about all my conditions so that they could see I really was disabled physically by my health conditions. So maybe better to do what @threetimes said and write up a letter explaining everything for co-workers/boss, so that everyone is on the same page and you dont run into the problem I did (-: If you do choose to do that, I would stress that if you have to miss work b/c of your medical conditions, you always make it up and/or that you always make sure to complete your work on time despite your conditions, something that lets them know work is still a top priority for you.