What is the most common response when someone asks, “How are you feeling?”
If you are like the majority of lupus patients, the first thing you think but the last thing you WOULD say is, “Well, my GFR is not looking good, my joints are killing me, I am anemic, and my medication side-effects are awful.”
In actuality, the first thing you would say is usually this:
This is common in the chronic illness community, but do you ever wonder why? Why is it so hard to say the truth and so much “easier” just to say, “I’m fine?” In my humble opinion, the reason it is less of a hassle to say “I’m fine,” or “I’m okay,” or “I’m hanging in” is because the truth is super complicated, and any attempt to speak with brutal honesty may be in vain. As we all know, most people have little to no understanding of the complexity of lupus, nor do they want to (for the most part) be emotionally invested in learning about it. Answering a loaded question like “How are you feeling? Is incredibly tricky. You want to tell the truth, but you know laying a truth bomb may instill anxiety and heaviness.
I mean, how can you be “fine” when you live with an unpredictable health condition that causes pain, fatigue, and a host of other come-and-go symptoms?
So, why do you say you’re “fine” to our friends, family members, neighbors, co-workers, and even healthcare providers when you’re really anything but fine? In that moment, that millisecond of empty space before you respond to someone, you have to choose whether or not you want to manage their feelings and expectations. You have to choose to invest your time and energy with no return guarantee. So many feelings can come into play as you grapple with how much to say or not say and if the person asking really wanted an authentic response in the first place.
In those spaces, your "FINE" can actually mean that you are:
You may also be wondering about any one of these at that moment:
Are they asking out of courtesy, or do they really care?
Are they someone I trust?
Will they understand?
Will they be empathetic or competitive?
Will I make them uncomfortable?
How much time do they have?
My definition of ‘fine’ differs significantly from other people's, so how do I deal with that?
What is their body language saying?
Should I just throw in the towel and make a mixed tape of everything crappy that is going on with my health right now and hand it to them so they can put it in their tape players (I am so aging myself right now)
These questions may lead you down the “I’m fine” response path of least resistance. Now, let me be clear. This blog is not about beating yourself up if you have said "I'm fine” in the past five years or five minutes. This blog is also not intended to make you feel bad for asking someone else how THEY are doing. I mean, I ask people that all the time! I probably asked that a dozen times just in the lobby of my church yesterday! All this blog intends to do is bring attention to the fact that for people living with chronic illness — especially conditions that are often (not always) invisible, like lupus, arthritis, and most autoimmune inflammatory disorders — when someone asks, “How are you?” The answer is far from simple.
What should you say?
First, you can choose to answer as much or as little as you feel safe saying. That is something to always be aware of. You hold the power. Also, it is important to realize that the “I’m fine” response is primarily out of protection. Protection of yourself and of the feelings of the person hearing and observing your reaction. As my friend Teresa taught me, “Ultimately, none of us can "manage'' other peoples' needs or expectations. A wise therapist once told me: "we can't 'think, feel, or do' for others, only for ourselves." Trying to "manage '' anything outside of our own "lane" means operating with a lot of limited assumptions. Especially while managing a finite number of spoons, trying to "manage other people's expectations'' may be a quick recipe for disaster. As someone she read said, "I had to learn, painfully, through a broken marriage and the trauma of a daughter addicted to heroin, that in attempting to ‘rescue’ my nearest and dearest – i.e. save them from themselves – I was merely trying to fulfill my own definition of love. Real love, as I later discovered, sometimes demands that we ‘let go’ and facilitate self-responsibility in those we love (From Shine a Light on Life, August 2020).
Here’s the thing: when we emphasize protecting people's feelings so much, we can fall into the trap of only showing parts of ourselves. The parts that we think are pleasing and acceptable. This is something that I have done more than once. Unfortunately, I have learned that it teaches your friend, co-worker or family member that lupus is not a “good part of you.” It also starts playing a record over in your brain of believing that yourself.
Listen, lupus is hard and challenging, and lupus can rough you up sometimes. There is no denying that. But to constantly fight against it, is to constantly fight against yourself. It is running through your veins. It is embedded in your DNA. As hard as it is to admit, it is not the worst part of you. It is just A PART of you. You are many things. We all are made of many things, many “parts,” and the “big, bad, terrible thing” isn’t the sum of you. However, it may be in those broken places that you see more light pour in you. More compassion. More empathy. More appreciation for this one precious life.
On the flipside, we don’t have to go to the extreme either. As Teresa mentions in the blog she wrote for us, “You also don't have to suddenly drop everything and figure out how to "not care what others think or need." Just start by adding yourself to the "list of important people to notice," too.”
So, let me ask you how you would feel about responding to the “How are you doing?” question with just a little more authenticity.
Like with one of these?
1 – I’m not doing well.
2 – I’ve seen better days.
3 – Today was rough.
4 – I’m struggling a little right now.
5 – I’ve been better, to be honest.
You could even say “Comparatively at the moment, I really am fine.” Because honestly, “Fine” is such a relative term.
What is the worst thing that will happen? Will it make someone sad, uncomfortable, or annoyed that they must now give more time and ask follow-up questions? They asked. How they choose to respond is on them. Refuse to play the “let me do all the heavy lifting game” and try to manage their feelings. They asked, and you answered honestly. The end.
When you feel free, to be honest in safe spaces, you are not only being true to yourself by allowing your story to be heard, but you are doing the lupus community a collective favor. Heck, you are doing a favor to all the chronic illness-disabled community. You are spreading awareness. You are speaking up and speaking the truth. You are loving yourself enough to honor your story.
As James Baldwin says,
“love takes off the masks that we fear we cannot live without and know we cannot live within.”
There is a quote that I often think about when I am not being honest with others and I feel the need to hide certain parts of myself. “If you are silent about your pain, they’ll kill you and say you enjoyed it.” - Zora Neale Hurston
Be real with safe people. Vett those who are not safe. If they are unsafe, refuse to play the game of managing them. Move on. They are not your people. Find your people and invest in them. Show up for them the way you would like them to show up for you. That way, the next time they ask, "How are you?” You can be you. The real you.
And lay the rest of it down.
“Oh, the comfort
The inexpressible comfort
Of feeling safe with a person
Having neither to weigh thoughts
Nor measure words
But pouring them
All right out, just as they are
Chaff and grain together,
Certain that a faithful hand will
Take and sift them.
And with the breath of kindness
Blow the rest away.”
By Dina Craik
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