Rare Share: Responding to “How Are You?” with a Rare Disease

August 15, 2013

Tired. Confused. Scared. Lost. Sick. Fragile. Anxious.

These may be what you’re feeling, but it’s hard to voice the true response to the question “How are you?” when you’re battling a rare disease and the fight is chronic and generally misunderstood. Many of us in the rare disease community respond with “I’m fine” when people ask how we are doing. Many times, we use this line to avoid telling them the truth.

Do we do it because it is easier? Because the truth is too complicated? How many times have you used “I’m fine” and not mean it — and why? We reached out to our followers on Facebook and here’s what they had to say:

“Sometimes I will use this when I sense the other person really was asking as a social convention and the body language tells me they are not receptive. Other times it is holding back the floodgates of emotion- F.I.N.E = frustrated, inundated,nerve-wracked, & exhausted.”


“I use it a lot. Most people ask as a courtesy, not an interest. Plus the details aren’t everyone’s business. And sometimes too, I don’t feel like delving into it, that’s exhausting also.”


“Many times I just reply with fine because people in general don’t necessarily listen to the answer….’ How are you doing.” It is such a formality and people are so used to hearing ‘fine,’ that they don’t even listen for the answer…
Take time to actually listen next time you ask someone how they are doing. You might just be helping uplift someone by that simple gesture..”


“90% of the time they wouldn’t understand the why, and 10% of the time you don’t want to sound depressing to others!”


“Someone told me that FINE means frustrated, irritated, negative, and exhausted….”


“I tell people I am fine because it is easier than explaining why I am not and then hearing all the ways someone thinks I can make everything better”


“Daily, because even thought people ask how you are doing they don’t really want to know the truth or can’t handle the truth.”


“I use it because any other explanation is just to complicated, besides most people really don’t care. Not to mention they don’t understand!”


“Every time I’m asked how I am I now say “fine.” I got tired of hearing “I’m so sorry” or, “everything will work out.” I don’t like it when someone says I’m sorry when I tell them I have two children with special needs, I know it’s the typical response, but why apologize about having two wonderful children? I got tired of people trying to fix it. You can’t.”


“I cannot even begin to count the times. I find that saying ‘I’m fine’ instead of ‘I worry everyday that my daughter will not live another day’ spares others the pressure to say the ‘right thing'(or hurt my feelings by saying the completely wrong thing).”


“I do it daily, a lot of times for the reasons stated above, but also because telling someone who isn’t expecting the real answer often leaves them dumbfounded and at a loss for words when you tell them your child is in the hospital now more than home, their lungs are failing and there’s nothing you can do. It’s fine for those close to you to hear it, but acquaintances, I leave it at fine.”


“The “I’m Fine” answer is used with those of us with rare diseases, chronic pain, broken hearts, living with loss of any kind. It is easier. And yet it’s what builds walls around ourselves so that we don’t have to ‘deal’. It’s easier [because] we don’t have to deal with ignorant or silly responses, so we don’t have to re-explain or teach, so we can just stay in our ‘safe’ place. And that’s okay. As long as we are ‘fine’. However, in order to ‘heal’, we must be in relationship with others that can help us … Help us research, teach, pray, love unconditionally. So maybe we need to stop with the ‘I’m fine’ and start choosing to say ‘I’m Healing’ or ask the face asking ‘do you really want to know? This may take a while'”


“In Germany if you ask a person “How are you”, you are prepared to hear how the person really feels. So I was very confused in America when answering to “how are you” how I really felt and receiving blank faces. Nowadays talking to Americans I just say fine, it is so much easier.”


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