Multiple sclerosis (MS) is a progressive neurological condition. It occurs when brain and spinal cord lesions develop and disrupt signaling between nerve cells. This can affect both physical and mental health and lead to symptoms involving mobility and sensory issues, visual disturbances, and pain.
While many treatment options are available for MS, there’s currently no cure. The debilitating and progressive nature of the disease might negatively impact quality of life for some people living with MS.
However, everyone living with MS experiences it differently. That means quality of life for people who have MS can vary from person to person.
In this article, we examine research that identified important factors that can affect quality of life with MS.
A 2022 study shared how quality of life differs among people living with MS and how it changes through the years.
This study involved the results from more than 57,000 questionnaires completed by 4,888 people living with MS. Researchers began collecting these questionnaires in 1996. Responses spanned from 1 to 27 years since the participants’ MS diagnoses.
Researchers aimed to identify factors affecting the quality of life of people living with MS.
To identify the factors, researchers examined the impact of MS on participants’ physical health and how their mental health (the perception of their health and well-being) played a role. Researchers then divided the questionnaire results into physical health-related quality of life and mental health-related quality of life.
The researchers worked on determining which factors were more common in people who had lower physical health-related quality of life scores compared with the others.
They found that overall, a reduced physical health-related quality of life with MS occurred more often in people assigned male at birth and in people with:
- worse physical impairment and fatigue
- longer diagnostic delays
- additional physical conditions
- more recent diagnoses
- diagnoses during older adulthood
These findings aligned with results from a 2016 study involving adults living with MS from Canada. This study also found that increased disability, fatigue, and having multiple physical health conditions linked to worse physical health-related quality of life in MS.
In the 2022 study, most of the people experienced moderately to persistently low physical health-related quality of life throughout the course of disease.
About 1 in 3 people seemed to experience a decline in physical health-related quality of life during the first 8 or 10 years of diagnosis that returned to a more typical level in the following years.
In about 1 in 7 people, physical health-related quality of life remained as usual for the majority of their disease, with a decline not starting until the third decade after diagnosis.
The researchers also worked on understanding which factors were more common in people who had lower mental health-related quality of life scores compared with the others.
They found that those who consistently had the lowest mental health-related quality of life were more likely to have an annual income less than or equal to $50,000 and lack a higher education.
Both of these factors appeared to negatively affect physical health-related quality of life as well.
A reduced mental health-related quality of life with MS seemed to occur more often in nonwhite people, potentially due to socioeconomic or health inequities, and people with a:
- diagnosis at a younger age
- worse physical impairment
- mental health condition
- more recent diagnosis
In the study, more than half of the people surveyed reported moderately to persistently low mental health-related quality of life.
More than 1 in 5 people experienced an early decline in mental health-related quality of life that returned to a typical level within 10 years of diagnosis.
Meanwhile, more than 1 in 4 people reported persistently unaffected mental health-related quality of life.
These study findings showed that age, race, income, and education can be predictors for quality of life. This suggests that when considering social and socioeconomic factors, MS can affect each person’s quality of life differently. This may be particularly true when it comes to mental health.
Understanding how social and socioeconomic factors impact people’s experiences with MS is important. It may help explain
Other social factors that may negatively affect quality of life for some people with MS
- job and income loss
- lack of caregiver and social support
- family tension
- lack of education about MS
Some of these factors that affect quality of life are out of your hands. However, there are still steps you can take to help improve quality of life with MS.
The National Multiple Sclerosis Society recommends many tips for living well with MS, including:
- following healthy lifestyle habits, such as eating a balanced diet, avoiding smoking, and getting regular physical activity
- developing healthy coping mechanisms and stress management techniques
- focusing on your emotional and spiritual well-being
- keeping your mind active through activities such as reading, writing, or doing puzzles
- maintaining your current friendships and building new ones, such as through an MS support group
Sticking to your MS treatment plan is another way to help improve quality of life. The goal of MS treatment is to reduce disability and prevent disease progression. Since physical disability can be a strong predictor of reduced quality of life, sticking to your treatment plan may help improve or maintain your quality of life.
If your current treatment plan is ineffective for you, talk with your neurologist about other options. Several treatment-related factors can also affect quality of life with MS,
- treatment effects on disease symptoms
- side effects
- the way of administering treatment
The physical and mental health effects of living with MS can be challenging and can negatively impact your quality of life in several ways. These include MS symptoms and disability, as well as social factors and treatment considerations.
While it’s difficult to change some of these factors, there are steps you can take to help improve your physical and mental health and overall quality of life. Work with your neurologist to identify steps to help you best manage MS and improve your quality of life.