“How are you?” is a standard greeting among friends and acquaintances. It can be a societal expectation or norm. Answering when living with a chronic disease like multiple sclerosis (MS) is anything but simple. Those with MS are rarely the standard answer of “fine.”
MultipleSclerosis.net published an article about navigating the “How are you” question with MS. The article resonated with many members, and it generated a number of comments! Here are some community insights.
Using humor
A few respondents shared the approach of using humor to answer the question. Humor deflects from how a person is feeling without needing to say “fine.”
“(Insert humor). ‘What’s the scale?’ or ‘I take the 5th.’”
“I tend to joke about it.”
“My go-to answer is, ‘I am breathing and swearing.’”
I’m fine
The socially expected answer to “How are you?” is often “I’m fine.” For those with MS, sticking to that is often easiest. Explaining MS to others is difficult. Trying to share feeling awful while visibly looking okay is exhausting. Answers other than “fine” can lead to unsolicited advice.
“I always say ‘ok,’ and then I hear ‘You look so good,’ and then I feel like my real pain must be fake.”
“I always say, ‘I’m alright, fine, ok’ – take your pick of verbiage. Unless it is a terrible, horrible day, why say anything else?”
“I default to ‘still going.’”
No one wants an honest answer
Many respondents shared the feeling that those who ask do not want honesty. Friends and acquaintances want the easy, expected answer. Explaining MS to others is too draining.
“I truly believe that people don’t care that much to actually hear you when you give them an honest answer to their “How are you feeling/doing” questions. They’re just asking because of some old social protocol or need to make themselves feel like they have done their part in helping you.”
“I tell them – ‘I’m still here and breathing.’ They don’t care or listen to the answer. They’re just trying to be polite.”
“Answer? ‘Fine’ or ‘A little tired today’ – then next subject. People do not want to hear the details of another’s illness unless they have it too or are close to someone with MS. This is not universal, but it is so in my 36-year case.”
Responding with honesty
Several respondents shared the decision to answer honestly when asked. Painting an honest picture of life with MS feels important.
“I decided 3 years ago to stop saying I’m fine when I’m not. People have learned if you don’t want the truth, don’t ask.”
“I try to be honest without being Eeyore. If I start to fade or hit the wall, it is then that I will excuse myself.”
“My arms are usually black, blue, yellow from blood draws and infusions, so I just lift my sleeve and say ‘about this well and still here fighting.’ It usually gets me a stunned look.”
“I’ve learned to tell people when I’m having a bad day.”
Connecting with those who understand
Friendships with those living with MS or other chronic health problems mean so much. These friendships allow for unique compassion and understanding. Those check-ins are incredibly valuable.
“I have a friend who also has MS. When you get in the same room with someone who actually understands what is happening to you, it is very comforting. We go over strange symptoms and aches and pain, all the pain. We both feel heard at the end of our little sessions.”
“I have a couple of friends with their own health struggles who really mean it when they ask…I treasure those friends and will open up to them and try not to burden the others who just don’t understand.”
“For me, it depends on who is asking and where the setting is I’m being asked. I learned who/when it’s safe to have a good one-on-one.”
