For many, a diagnosis of multiple sclerosis can be both terrifying and a relief. Terrifying because of the unknown and assumptions about quality of life in the years ahead (more on this in a minute), but also a relief because there is finally a name connected to the problems that have plagued them.
First off, what is multiple sclerosis
A neurodegenerative disease, multiple sclerosis (MS) damages the fatty myelin sheaths around brain axons, which results in a wide range of symptoms, symptoms which can be debilitating. While until recently very little was known about MS, researchers have since made huge advances, and treatment can help manage the disease and its symptoms quite well.
Still, there are changes in quality of life, some of which can be significant.
What MS symptoms affect quality of life?
In particular, nerve damage and inflammation can result in MS patients losing at least some function in their extremities at various points in their disease. Flare-ups are common, and result in periods of time in which MS symptoms are markedly worse. These worsened symptoms may affect the extremities, digestive system, brain, or vision. Some research suggests that flare-ups are more common in the spring and summer, though more research is needed to determine why this is (though some researchers have theorized it may have something to do with increased exposure to heat, which is known to exacerbate symptoms for some MS patients, but more research is needed yet).
These flare-ups can be severe enough to be debilitating, but even if they are not so severe, they generally require greater outside assistance, and may make it impossible for MS patients to work during this time.
As a result, MS patients are often unable to keep up full-time employment, though there are of course exceptions. For those who are unable to work, disability benefits can help with the financial limitations, but the inability to work can still have profound effects on quality of life for those who struggle to adapt to their new reality.
Because MS is normally diagnosed at some point in the peak productive ages of 20-50 years, losing an income can have tremendous impacts on a family’s financial situation, causing strain both for the patient and their family. Even if symptoms do not make it impossible for a MS patient to continue working, other factors can make work and the rest of life more difficult.
Other extenuating circumstances/symptoms
The symptoms of MS, even if not debilitating enough to keep someone from productively working, can often affect other parts of a person’s life.
For instance, decreased mobility, limb function, and coordination can all offer unique challenges. Additionally, the fatigue that most MS patients experience can make everything more difficult than it was previous, which can have obvious mental and physical ramifications.
Added fatigue can contribute to the risk of injury or sickness, which is already heightened by a compromised immune system (as MS is an autoimmune disorder). Similarly, fatigue can have major mental health consequences, including increased anxiety and depression. As a result, many MS patients may well benefit from adding mental health care to their treatment regimen.
Additionally, multiple sclerosis can result in strained relationships, both as patients struggle to adapt to their new realities, have difficulties asking for help, and as friends and families struggle to adapt as well, or have difficulty handling their grief at the new normal.
Similarly, symptoms brought on by MS means those individuals can often not be as active or share the same lifestyle they previously did, which can put additional strain on relationships, whether that relationship is with a spouse, family member, or friend.
The economic and financial strains that can result from MS also can strain relationships, which can add stress that makes things worse. Similarly, the fatigue brought on by MS can often put a damper on couples’ intimacy, which also results in strain.
As a result, I again recommend patients consider counseling, which can make a major difference in developing healthier and more appropriate coping methods for dealing with this strain.
Lastly, I recommend that both MS patients and their family and friends really make a point of practicing self care so that they are better able to deal with these changes. This means getting enough sleep, eating well, exercising regularly as able, and communicating well with others.
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