When someone says they’re having a “relapse,” it usually isn’t a good thing. A relapse suggests that someone has returned or digressed to a bad behavior. For those with multiple sclerosis (MS), having a relapse isn’t something that can be controlled.

MS relapses can come and go without warning. They can make symptoms worse or bring on new symptoms. They’re different for everyone and can be difficult to put into words.

This is how our Living with Multiple Sclerosis Facebook community explains, or at least tries to explain, how they’re feeling during a MS relapse to their friends and family.

“I say ‘I’m numb again.’ There’s really nothing more for me to say. They can’t relate and it’s hard to explain how terrible I feel, so I leave it at that.”

Rosy Lopez, Syracuse, New York

“[I] have not had one that put me in a hospital or needed meds for 9 years. The fear is always in the back of my mind, but I have learned how to block it out and move on with daily life. As it was then, it’s not something that I could get anyone to understand and that was tough.”

Cheryle Young, Etowah, Arkansas

“I have so much chronic pain and fatigue that I don’t know when and if I am having a relapse or not. No pun intended but it’s very unnerving.”

Tom Rendulic, Plano, Texas

“Every attack is different! Like a surprise!!”

Linda Bolles, La Porte, Indiana

“Once I became knowledgeable and used to having the debilitating disease, MS relapses that occur within me are like getting a head cold. … I leave friends and family out of my relapses so that they need not concern themselves over my health issues.”

Shawna Jones, Bastrop, Texas

“I’m in the middle of one. I kind of feel like people are not interested, especially since MS doesn’t make you look like a cadaver while it’s ravishing your body. The hug has worsened exponentially this time around and I’m getting daily frequent attacks, but how can you explain the hug to a normal person? Words fail.”

Tumba Makayi, Zambia

“My last attack completely paralyzed me on the left side. It was the first time there was a show of understanding as all of a sudden my invisible illness wasn’t quite so invisible. I am still working to get my full function back. But normal attacks are so hard to explain to people.”

Jessica West, Sioux City, Iowa