In recognition of Multiple Sclerosis Awareness Month in March, the MS Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us facebook, Instagram, Xand Pinterest For more stories like this, using the hashtag #MSAwarenessMonth, or read on The complete series.
When I was diagnosed with multiple sclerosis (MS) in 2019, I focused almost entirely on the physical aspects of the disease. Like many people with a new MS diagnosis, I focused on symptoms, mobility, and what MS could do to my body. My energy was in knowing what was happening to me physically and how I could manage it.
What I didn’t focus on—and what I now know was a mistake—was the mental and emotional side of living with MS.
At that point, I believed that if I could manage the physical symptoms, everything else would fall into place. I thought I was mentally strong enough to handle the emotional impact on myself. I didn’t think much about how uncertainty, fear, and loss could affect me over time, and I didn’t prioritize support for my own mental well-being.
However, MS doesn’t just affect how you move or feel physically. It affects how you think, how you cope, and how you process the reality that your life has changed. The mental side of MS can be just as challenging as the physical symptoms, although it is less noticeable.
Ignoring this part of the disease can take a toll in silence. You may feel isolated, overwhelmed, or misunderstood, even when you’re managing well on the surface. Looking back, I see how much I initially underestimated this effect.
That’s why I strongly encourage anyone newly diagnosed—and even those who have been living with MS for years—to take advantage of programs like the National MS Society’s MSFriends program. Having people who really understand what you’re going through is very important to overall well-being.
Support from family and friends is essential, but it doesn’t always fill every gap. My wife, for example, is supportive in every way imaginable, and I am incredibly grateful for that. However, he does not have MS. As much as he tries, he doesn’t fully understand what it’s like to live with a disease that affects him in different ways every day.
She doesn’t wake up wondering how her body will feel, how fatigue might interfere with plans, or how symptoms can change without warning. It doesn’t reflect a lack of care—it’s just the difference between living with MS and loving someone who does.
Ability to communicate with someone does Having MS is different. There is no need to explain or justify how you feel. There is an immediate understanding that comes from shared experience. Such a relationship can be deeply affirmed and assured.
Programs like MSFriends provide a place where these conversations can take place. For me, connecting with others living with MS has helped reduce feelings of isolation and reminded me that I am not alone in this journey. Sometimes, just knowing that someone else understands can make a difficult day easier to handle.
Looking back, I wish I had paid as much attention to the mental side of MS from the beginning as the physical side. Early access to emotional health could have helped me cope more effectively and adjust to life with MS in a healthier way.
If you are newly diagnosed, my advice is simple: don’t wait. Take care of your mental health as soon as possible. Reach out, seek support, and find community. Whether through MSFriends or another program, connecting with others who really know can be just as important as any medication or treatment plan.
#important #mental #health #early #process