Even well-meaning and well-informed people can have misconceptions about Multiple Sclerosis. This complex illness affects everyone differently, so it is best not to assume that a person will always face certain symptoms, or that they’re having an easier time of it because they are not in a wheelchair. Read on to learn about some common misconceptions and stereotypes that exist about MS and how to counter these myths with truth.
Living with Multiple Sclerosis is always challenging: True!
Multiple Sclerosis is a disease in which the causes are unknown and the progression of symptoms is uncertain. It can affect many bodily systems, from basic biological functions, to the ability to walk, talk, think, and remember.
Even when treatment is initiated, and resources are available, people affected by MS and their family members will always have to adjustments to make. Having a chronic illness like MS is similar to running a marathon. The people who are involved, are in it for the long haul and they have to know their own energy level very well and always be ready to make adjustments based on sudden setbacks. The only difference is, this marathon has no ending.
If you know someone with MS, even if they have no visible symptoms, remember they’re affected by a condition which can severely change their energy levels from day to day. If they had energy yesterday, they might be exhausted today. They are also subject to regular changes in how they walk, talk, think and remember. The struggle they are going through is real and should be treated seriously.
Everyone with MS will end up in a wheelchair: False!
There is no way to predict the course of MS. Doctors and other clinicians can make an educated guess based on other patients’ experiences and the modifying effects of treatment, health, and other factors. But even a medical statement about the course of MS is subject to change for every affected person.
The uncertainty of MS can bring its share of hardships. But it also means that no one has the right to say that everyone with MS will face the same outcome. It’s not true that everyone with MS will end up in a wheelchair, any more than it’s true to say, that someone with MS will win the lottery, or be struck by lightning, or any other unpredictable event. And by saying that everyone will MS will face certain outcomes, it denies that person the right to go through their own illness experience free from the fears that other people may add to their experience.
If you know someone with MS, even if they have visible symptoms, remember that the course of symptoms is uncertain, even from a doctor’s perspective. Let them go through their illness experience without making judgments or assumptions about what will happen. If you are afraid of something that may happen to the person with MS, bring it up as a personal fear you have, not something they will definitely go through.
If you are young it is easier to heal: False!
Multiple sclerosis is an insidious condition, it can affect people as early as their 20’s, and there is no current cure. It is important to recognize the onset of MS and begin treatment as early as possible. However, being diagnosed at a younger age does not mean it will be easier for a person to deal with the condition.
For that matter, the same is true for conditions such as, being physically stronger, or having a high cognitive ability, or any other trait that might distinguish a person with MS from another person with MS. There is no set-in-stone list of factors that will make it easier to recover from MS, the disease can affect a very strong person just as severely as a person who is not as physically strong. It is the disease itself which creates uncertainty and makes every case different.
If you know someone with MS, even if they are diagnosed at a younger age, do not assume that the course of MS will be easier for them, since they are younger, or stronger, or more cognitively active. The disease itself is uncertain and so there is no predicting the course of MS based on age or other factors. That person will benefit from your support and your understanding more than any assumption of how they will heal.
If you have MS you should have a healthy diet: True!
Eating healthy is a good idea for everyone but especially for people affected by MS. A well-balanced diet provides energy and strengthens the body’s ability to fight infections and decreases the risk of other diseases. Certain diets lower the body’s overall level of inflammation and regulate the immune system. In addition, weight control is very important in the presence of MS symptoms such as fatigue, pain, reduced mobility that can lead to reduced physical activity.
Currently there is no evidence that a particular diet alone can affect multiple sclerosis and there is no universally recognized diet that can improve the symptoms of the disease. It is a good idea for the person with MS to talk to their doctor and discuss their current dietary habits, and get information about changes that could help, or a referral to a nutritional specialist. Proper nutrition can ensure a better quality of life and improve general health conditions.
If you know someone with MS, they may change their diet to be healthier, and you can support them by respecting this decision. Some people with MS may decide to avoid pro-inflammatory foods or commit themselves to a lower-calorie diet so they can keep the weight off and stay active despite fatigue, pain, and reduced mobility. This is a different decision for every person with MS and you can help by respecting that.
People with Relapsing-Remitting MS (RRMS) or Secondary Progressive MS (SPMS) often have sleep disorders: True!
Many people affected by MS, especially relapsing-remitting or secondary progressive MS, may have to cope with sleep disorders related to their condition. The most common are insomnia, circadian rhythm sleep disorders, sleep-related movement disorders, sleep-related breathing disorders and narcolepsy.
Additionally, almost everyone affected by MS will have some degree of fatigue; this is a result of the way MS slows down nerve transmissions and makes it more difficult to perform any kind of task. Even something as basic as using your senses to take in information, can become very tiring, for some people affected by MS. If they have a sleep disorder and aren’t getting enough sleep during the night, this could worsen the fatigue they experience during the day.
If you know someone with MS, be aware they might be facing severe fatigue and sleep disorders. Understanding this aspect of MS and being sympathetic, if the individual needs to change or cancel plans due to their fatigue and sleep changes, can be a way to help that person.
Multiple sclerosis is contagious: False!
No, multiple sclerosis is not contagious! The symptoms of MS are caused by changes in a person’s immune system. The immune system attacks the myelin sheath that surrounds nerves and helps them conduct information from the brain to different parts of the body. This is an entirely internal process and there’s no way for this disease to spread to another person through any form of contact.
If you know someone with MS, be aware there is nothing contagious about their disease, and they can benefit immensely from your presence in their life. Don’t give up on those hugs and other shows of affection. People with MS can benefit greatly from massages from a trusted partner, as well. The only thing in MS that gets shared between two people, are the emotions that come with MS, both negative and positive.
Multiple sclerosis changes life: True!
It is impossible to tell exactly how MS will affect a person’s life, but what can be known for sure, is that it will affect that person’s life, and will do so in a very unpredictable way. Symptoms can manifest without warning, and after they show up, they may recede altogether, or seem to slowly recede and then come back, or they may not recede at all. Affected persons may have to make very quick decisions and changes in their life on the basis of these symptoms. If you know a person with MS, you can play an important role for them, by reminding them despite these life changes they are still the same person with the same dreams. A dream of traveling the world may have to be delayed but needn’t be abandoned; with the right supports, travel and other dreams is very possible.
If you know someone with MS, be prepared for changes to take place in their life, which can occur suddenly, or slowly over time. Be aware that the consequences of some MS symptoms, like the loss of mobility, or vision problems, can force an affected person to make changes in their life and impose limitations on themselves. You can support them by supporting their identity, and the preservation of their identity despite these changes. If you are a partner to someone with MS, you can work with them to find ways they can achieve their dreams despite limitations imposed by this condition. There are many assistive devices and accommodations that can help a person work on their goals.
People with MS can suffer from depression: True!
Depression in MS is very common, more common in people affected by MS than in healthy subjects and more so than during many other chronic illnesses. Fear, uncertainty, and the prospect of having to impose limitations on one’s life, can certainly cause depression for many people affected by MS. But in some cases, depression can also result from neurological changes that may occur during MS, for instance, changes in the neuronal pathways that help people to regulate their emotions. For this reason, a person affected by depression from MS should speak with their neurologist for initial guidance about this problem. There are several treatment options which may include changes in medication, or counseling, or other ways of improving a person’s support network.
If you know someone with MS, understand they may experience depression and it could be a result of adjusting to MS psychologically or it could be caused by underlying neurological changes. Everyone has their own coping style, some people may seek out help and others may withdraw and avoid their emotions. The best way to help is to let them know you are available if they want to share their emotions with you.
Multiple sclerosis is sometimes an invisible disease: True!
A person could have severe MS and you may meet them and have no idea. Their symptoms could be invisible: fatigue, cognitive changes, vision changes, etc. They might have perfected the skill of covering up for fatigue and cognitive changes when they interact with other people, but then go home and collapse in exhaustion at keeping up the pretense. Many people with MS and other neurological illnesses have to keep reminding people they have MS. Being mistaken as being “lazy” or “slow” can hurt someone’s self-esteem but people with MS may go through that difficulty on a daily basis because their disease is invisible.
If you know someone with MS, remember symptoms change, sometimes from day to day, and the person who seems energetic and alert one moment might go home and collapse from exhaustion the next. If you are a person who takes their condition seriously and does not have doubts or suspicions, it is more likely the person affected by MS will be willing to confide in you. Remember that pretending to be OK around other people is a major source of stress and fatigue for people affected by MS. Respect the fact that some days can be worse than others.