Multiple sclerosis (MS) is a progressive disease. This means symptoms worsen as time goes on. Thinking about the future can cause anxiety. You worry about what happens in the future. 

We recently provided space for sharing those concerns on the MultipleSclerosis.net Facebook page. There, we asked community members to tell us: “What’s your biggest fear about aging with MS?” 

More than 600 responses revealed several common threads.

Mobility

As MS progresses, you find your balance and muscle strength declining. You worry how that may continue as you age. You are afraid of needing mobility assistance in the future. You want to continue moving unaided. You fear what life lived from a wheelchair or walker means.

“My ability to walk without help.”

“Being confined to a wheelchair.”

“Not being able to play baseball or any type of ball with my grandbabies.”

Forgetting

Brain fog and memory lapses are other symptoms of MS. You worry about the long-term impact on your cognition. Part of what defines you is communication. Losing more of your memory as you age causes anxiety. It is another piece of independence that MS steals.

“Losing my ability to solve important problems that are necessary for organized living.”

“Losing the part of me that makes me me.”

“Losing my memory. It’s pretty bad.”

Blindness

MS can affect vision. Optic neuritis is a common symptom that can cause pain with eye movement. It can also cause blurred vision, dim vision, or loss of color vision. Many of you shared the fear of losing your sight entirely. Optic neuritis tends to affect only 1 eye. The vision symptoms are often temporary but can become permanent.¹

“Losing my sight.”

“Not being able to see.”

“My biggest fear is losing my sight. I lost 1 eye already to optic neuritis, and I am afraid it will happen to my good eye.”

Burdening Family

Living with a progressive disease, you know your needs will increase. You worry about burdening your family with your care. You do not want your loved ones’ lives put on hold for you. You fear them resenting you. 

“Needing more care than my husband can provide.”

“Not being able to take care of myself; having to rely on people to help me.”

“That it will impact my daughter’s life. That I will end up an anchor around her neck.”

Loss of Independence

Along with being a burden, you worry about losing your independence. For many, that fear centers around going to a nursing home. Needing others to care for you in intimately personal ways feels shameful. You worry about becoming a victim in a poor facility. You want to continue doing things for yourself. MS threatens your long-term freedom and independence. 

“Needing a full-time caregiver.”

“The possibility of bad care in a facility when my family can’t take care of me any longer.”

“Having to go into a home and having to have people doing everything for me.”

“Being unable to travel on my own to see my family.”

Being Alone

Many of you already depend on a caregiver in some capacity. You worry about what might happen if you outlive your caregiver. You do not want to be left alone. Navigating MS is hard even with support. Considering how to manage MS alone is frightening. 

“Outliving my husband and only caretaker.”

“My wife passing before me.”

“To die alone.”

Thank You

We appreciate how many of you joined the conversation. There are clearly many fears around aging with MS. We hope there is comfort knowing others share your same fears. You are not alone. 

References:

1. Vision Problems. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Vision-Problems. Accessed 1/11/2022.