We recently published an article by one of our community experts on how a simple small talk question can take on an entirely different meaning when battling a chronic condition. Life with MS can make it extremely difficult, if not impossible, to continue working fulltime, often leading to career changes, unemployment, or life at home on disability. This can make answering the common question, “So, what do you do?” incredibly challenging. Invisible symptoms, seemingly good days, and the difficulty in trying to get others to understand your struggle can make your answer to this hard to put into words. So many of our community members shared their own experiences with us after reading Devin’s article, and created some really great discussion. We wanted to share some of the stories and responses we received!
Ways to Answer the Dreaded Question
“I am old enough now that I often just reply, ‘I’m retired.’ Then people look at me like I must have made lots of money and was lucky enough to retire early”
“I do facilitate workshops for those of us living with chronic conditions so that is an answer I sometimes give. I still hate the question though”
“Accept it. You are a fulltime caregiver…for yourself”
“So true, I feel like I’m always trying to justify myself to people! People see me and say, you look fine, you could work, but they don’t realize to be at that social gathering, I had to rest all week!”
How Life Without Work Has Impacted the Community
“I was an RN, and my role was to give comfort not get comfort from others. When I had to leave my last job, my world ended as I had always known it. I miss my used-to-be life”
“I couldn’t agree more. I’ve been on disability for almost 2 years now, and I hate every day of it. When I dreamed of not working, I didn’t dream of not being able to do anything else. I thought it would be fun! This is not fun. Feeling useless is horrible”
“I miss working! It is nice to be with other people. It allowed me to forget my MS for a little while until the fatigue would set in!”
Finding the Positive in the Struggle
“My family and friends want me to make ME the priority. This whole situation is rocking my world!”
“I was an electrical engineer. I spent a fortune on good education and then MS strikes. If there is any good in all this, it is that MS makes for a great friend filter. The friends that stick by you through the MS journey have been vetted and are truly friends”
“Couldn’t have said it better. Right now going through second round of disability approval! Never in my wildest dreams would I have thought I can’t work. Everyday is different, just don’t know how you are going to feel. One day, can’t get out of bed, next day feel like you could conquer the world. We just have to stay positive and hope we can take whatever comes our way!”
Regardless of how you answer this question, it was very clear to see from the community comments that you are not alone. Even those who didn’t share their own experience often responded with a resounding, “SO TRUE!” or “This hit the nail on the head for me!” Responses like these remind us why it is so important to be a part of our online community and support one another on this no-doubt challenging journey.
Let us know how you handle this question, or others like it, that can take on a whole new meaning when living with MS!