The invisible disease. The silent struggle. Unlike other diseases, Multiple Sclerosis can largely present only internally, mainly as pain and fatigue. This, in turn, creates an entirely new kind of pain—the pain of being alone in suffering. When others don’t know what is wrong, or can’t fully understand what it is like to live with MS day in and day out, most living with the diagnosis often forgo speaking up, and instead, learn to cope quietly.
But you don’t need to be quiet here.
We asked the community on the MultipleSclerosis.net Facebook page to speak up and weigh in on what people don’t see about MS. More than 115 commented on what pains you most about this largely invisible disease.
Here’s what they had to say about their daily challenges with MS.
“It can become a terrible grind of just trying to get through every day…”
Nearly everyone who responded to the prompt identified with the need to push themselves. So many said that they have way less energy than they need to complete their tasks at work and at home. Something has to give—and for most of you, what is sacrificed is your own personal comfort.
“It can become a terrible grind of just trying to get through every day, hoping for a good one. Yes, there are a few and, yes, I keep trying, but it is might hard.”
“This has become more true for me every day. By 3 p.m., my plane is about to crash. I have to push myself for the last hour at work just to make it. This all has happened suddenly. I had very good energy for a while, but now I’m fighting to move around.”
“People just don’t understand. I am also one who chooses to push myself too hard as well. I need to take some of those couch days. My job is not physical. I work an office job, but my brain is fried when I get home, and my body just hurts from fatigue. I try not to let it stop me, but some days I just give up.”
“I don’t have the guts to admit these truths to my friends and family.”
One of the first things that easily disappears is a sense of connection with others. When we’re hiding how we feel, stuffing down our own physical pain and emotional disappointment, we aren’t being our true selves. It’s lonely to never answer truthfully when someone asks how our day is going. But, it makes sense that those with MS would stop talking about it after not receiving empathy from friends and family. It can be a hard disease for people to understand, but that doesn’t necessarily mean we should give up talking about it.
“Wish I could explain to friends and family without sounding like a big baby.”
“I don’t have the guts to admit these truths to my friends and family. I just pass it off as ‘wanting down time to be lazy’ and ‘enjoy my weekend’ with no plans. Sometimes it’s tiring to look like I feel fine and ‘normal.’ And it’s embarrassing to seem like I’m just lazy and want to sit down all weekend.”
“Unless they live with me, people don’t know what it took to get me out the door today.”
As parents, friends, partners, bosses, and coworkers, we are used to having people depend on us. So many with MS have reported that it seems easier to keep pushing to deliver everything that others expect. But, the cost is high. Yes, there is the inevitable fatigue that follows. Some of you have also spoken about the loss of happiness. When was the last time you checked in with yourself to see what you most wanted to do? We have to remind ourselves it’s OK to set new limits, say ‘no’ to tasks we can no longer comfortably finish and to be honest with where we are at. And sometimes that honesty starts first with ourselves.
“Unless they live with me, people don’t know what it took to get me out the door today. What I didn’t do so I could be with them and what I won’t do tomorrow so I can recover from today.”
“I push myself to the point of pure exhaustion. I have a 6-year-old who is very active and also in basketball. I still try to be everything to everyone. No one sees my pain and weakness, even if I ‘m sitting on the floor in pain, unable to stand anymore. It’s been 15 years and no one gets that I’m not me anymore. I’m always busy making sure my family is happy that I have never stopped to ask myself if I am happy.”
“The thing about MS that frustrates me the most, other than the obvious fatigue, is that I look totally healthy.”
It’s unlikely that anyone with MS would wish to make matters worse by asking for physical signs of the disease—but there is a separate pain to struggling with a disease that is, more often that not, invisible. Even when there is a fall or a slip, bystanders do not know why. It is part of the burden of the disease to not be fully understood, especially by loved ones. The good news is that there is community. There is community here on MultipleSclerosis.net, and hopefully that emboldens everyone reading this to share a little more honestly with loved ones. And hopefully, our loved ones will read this to better understand the silent struggle.
“The thing about MS that frustrates me the most, other than the obvious fatigue, is that I look totally healthy. It’s difficult to explain that I look fine but that I feel like a train landed on me.”
We wish to thank everyone who participated in this conversation for their honesty. We know this is a hard topic to open up about, and we appreciate what was shared. It is our hope that everyone with MS feels more connected and less alone when reading how others with the diagnosis are handling their day to day. You are not alone.