MS? But I'm Still Young!
Digesting and accepting an MS diagnosis is hard at any age. Many children, teens, and young adults who are diagnosed with MS also deal with the added anxiety of living with a debilitating chronic condition during their "prime" years of life. They are also dealing with the progression and unpredictability that MS brings for the rest of their lives.
"When I was diagnosed nearly 20 years ago, I in no way expected to be pulled from the prime of my life and be in this position." - Community Advocate
Are younger people diagnosed with MS?
It turns out, statistically, many people diagnosed with MS still have a large portion of their lives ahead of them. While it may range from pediatric MS to middle-age onset, this entire group has to cope with a diagnosis that has no current cure. They must learn to live with MS by managing physical and emotional symptoms and making treatment decisions for the rest of their lives.1
In our 2021 MS In America survey, 47 percent of respondents said they were diagnosed when they were younger than 40 years old. The full respondent breakout was:
Age of diagnosis
- Under 20: 2 percent
- 20-29: 16 percent
- 30-39: 29 percent
- 40-49: 30 percent
- 50-59: 18 percent
- 60+: 5 percent
The National MS Society states that of the 1 million people who are diagnosed with MS in the United States, "Most people are diagnosed between the ages of 20 and 50." And as of 2017, almost 75 percent of people living with MS were women.1
The impact of a younger diagnosis
Not only do younger people with MS have to deal with potentially debilitating physical symptoms, but many times they also have a heavy emotional burden as well.
While fatigue or pain may cause canceled plans or turning down an invitation, missing out on big events and feeling different from peers can be extremely isolating. Most other young people can't relate to what it is like living with a chronic illness, so MS often adds a strain on relationships. Planning for the future like getting married, having children, or the next step in a career can also be complicated when factoring in the unknowns of MS.
"Me & my husband are trying to start a family, but you can't/shouldn't get pregnant when you are on the MS meds. That's the biggest issue we are having...so I haven't started any modifying drugs yet." - Community member
"Getting to grips with this was hard, but the constant symptoms at that time really were one after another. As soon as one thing cleared up, another began. Pretty soul-destroying at the time, when you're really supposed to be choosing your career and things!" - Community member
We know every MS diagnosis and management experience is different. Share the impact that MS has had on major aspects of your life by selecting your answers below:
How old were you when you were diagnosed?
MS has impacted my intimate relationships (dating, marriage, sexual):
MS has impacted my friendships:
MS has impacted my decision to have children or my relationship with my children:
MS has impacted my career decisions:
Please share more about your experience in the comments! At what age did you receive your diagnosis? How is it impacting different aspects of your life? Or, how has it impacted your life as you've grown older?
Have you taken our 2023 In America Survey yet?