Living with an invisible illness like MS can be so difficult in so many ways. It is very common for people with MS to express frustration when it comes to getting others to understand how they are feeling and what they are going through. One of the contributors at MultipleSclerosis.net, Laura Kolczkowski, wrote an article about how she describes her MS symptoms, and a great number of our community members responded. Here’s what they had to say:

This is how I describe my symptoms

• The MS hug I have feels like the cramp you get when you have a coughing fit and your stomach or ribs cramp up. Also it feels like Braxton Hicks contractions. I’ve lost the motor skills in my right hand. Writing with a pen has become nearly impossible. Those are a few descriptions I’ve used.
• They keep asking why am I not smiling? I say, “well its hard to smile when it feels like your being boiled in oil, but I will try and do better.”
• When doctors ask me how do you feel, I say, “Worse than yesterday, better than I will feel tomorrow.”
• It’s very hard to explain. When asked, “how are you?” I usually say, “I’m doing okay.” Sometimes I say, “I’m doing well.” I wish I could say that with sincerity though! I just don’t want to seem like a downer all the time.
• I get tired of hearing, “what do you mean you don’t feel so good? You look great.” I just smile and say thank you and stop talking. It’s just easier.
• I say I am doing unreasonably well.

It’s really difficult to get people to understand

• It’s so hard to get people who are around you to understand. There are times that I feel like just getting up and going to the bathroom is a chore. I’m sure people now see me as lazy. I was once not long ago full of energy and got stuff done. Now, doing the dishes or going for walks wipes me out for hours.
• I don’t bother “describing MS & its symptoms” anymore.
• I have been diagnosed with MS for over 9 years and my husband who has been with me all of that time still thinks I am faking the fatigue because some days I do have energy! He will never get it!
• If you can communicate MS symptoms, how awful you feel, balance issues, fatigue etc., then people friends view us as “crippled”, less capable, and then THAT is our label. I am still looking for the happy middle ground. I am not a crippled person every day and that is the difficulty others have problems understanding, even some professionals.
• My daughter in law had said to me, “if you just get up and try to exercise..” How could I when I couldn’t even walk? My son would say the same thing – there’s nothing wrong with you. I know somebody that has MS and they don’t look like that.
• I don’t bother “describing MS & its symptoms” anymore.
• When I am having a horrible flair and my speech and walking are affected, then people act like, “oh, poor baby”, but days that I “look” normal and sound normal, I hear, “well, you must be cured.”
• ‪ I also don’t bother describing MS symptoms any more. I just say I’m fine. Most people aren’t interested.
• Unless you look absolutely pathetic a lot of people do not think anything is wrong with you. But I will still have a smile on my face and keep on being positive despite having MS. I am not letting it beat me.
• ‪I understand people think if they can’t see the problem you don’t have one. Lots of time my back hurts so bad I can’t stand it, but if they don’t see it they don’t understand.
• I choose to not tell people that I’m sick.
• I actually I have been accused of trying to be manipulative. It’s terrible.
• There are some people in my family who, if I’m wearing a brace on my foot/leg, and they think I’m just wearing it to get attention.
• This happens too many times. MS is truly invisible except to us.

What about you? Do people assume you are fine because you don’t “look” sick? How do you describe your MS symptoms to help people understand?