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Now You See It, Now You Don’t: MS & Invisible Symptoms

By Patricia Daily | Some medical problems, for example a broken leg, have visible physical manifestations. That there is something amiss is obvious to everyone. Other medical conditions, for example migraines, cause symptoms that interfere with life and health but are not usually visible to others. Medical problems that have invisible symptoms are frustrating because others often
fail to recognize the limitations that they impose. Multiple sclerosis is a chronic neurological disease that can cause visible and invisible symptoms. This article focuses on the different challenges that these different symptom presentations cause for someone living with MS.

VISIBLE MS: SEEING IS BELIEVING

Sometimes MS causes noticeable physical impairments. Problems with walking, hand tremors, or slurred speech are examples of very visible, troublesome and disruptive symptoms. They alter your physical abilities and complicate everyday tasks like going to the grocery store, drinking a cup of coffee or ordering something over the telephone. They can alter your social identity by interfering with employment, hobbies, and other things you routinely do. 

They can also change how others interact with you. Our society abounds with stereotypes about appearance— tall people play basketball, physically beautiful people have a great social life, the list is endless. We take for granted that we can tell if someone is healthy just by looking and when someone is different from the “healthy” stereotype, we make snap judgments about the cause. If you use a wheelchair or
have balance problems it’s common for people to jump to erroneous and often ridiculous conclusions about why you do and what it means about what can be expected of you. One of the big hurdles for people with visible MS symptoms is to manage the misconceptions that others may have about them. A woman with MS who has used a wheelchair for years reports “Strangers are surprised to know I have a husband and kids, drive a car, have a good job and can order off of a menu by myself. The thing I can’t do is walk.” 

These changes in your physical and social world create psychological challenges as well. They can cause anger, grief, guilt, depression, and impact self-esteem. It can take a long time to find a comfortable way to present yourself in the world and to accept assistance without feeling diminished, damaged and dependent.

INVISIBLE SYMPTOMS: THERE IS MORE TO THIS THAN MEETS THE EYE

Sometimes the problems caused by MS are not obvious to the outside world. Vision impairments, numbness, fatigue, pain, and cognitive problems are a few of the common invisible symptoms. Although invisible problems may have a profound effect on you and how you function in the world, they are not evident to other people, and although they alter what you can do, they don’t necessarily alter what other people expect you to do. Invisible problems have a big impact on physical, emotional and social aspects of your life when you’re living with MS. A 2008 study that compared the life impact of visible verses invisible symptoms found that, at least in the first 11 years, invisible symptoms were significantly more likely to cause health distress.

Invisible is a word that has multiple meanings. It can mean “to obscure or hide ” like the magic cloak that Harry Potter used to prevent other people from seeing him. Invisible sometimes implies “imaginary” or “made-up” like the invisible friend you might have had when you were five. MS symptoms can present themselves in both ways.

HIDDEN MS

Visual disturbances, sensory problems such as numbness, and bowel and bladder problems are MS symptoms that are apparent and troublesome to the person who has them and observable to your doctor on exam, but unseen by the people around you. These are examples of the invisible-hidden symptoms.

The physical impact of these invisible-hidden symptoms can be as life altering as obvious physical impairments. Visual problems can make it hard to read and impossible to drive. Numbness can make it hard to button buttons, tie shoes, and type, and make it easier to burn your fingers because you can’t feel heat. You might be more apt to drop things or bump into tables and this can cause you to look and feel like a klutz. Invisible-hidden problems can be emotionally draining because they may require you to explain yourself or talk about MS and some people really don’t like to do that.

Although others don’t see these problems, once you explain that you have vision problems when you get overheated or numb fingers that make it hard for you to pick up small objects, they will usually accepted these limitations as legitimate MS symptoms. However, even though you’ve explained to someone that you have a problem, because they can’t see it, they may forget it exists. It can be tedious, frustrating and demoralizing to have to remind someone repeatedly that there is something“wrong” with you. Some problems, for example vision, also fluctuate from hour to hour and it can also be hard to explain that sometimes you have the problem and sometimes you don’t.

Other problems, especially those involving bowel and bladder function, are embarrassing and people who have them may not want to explain them. They may cope with them instead by avoiding situations where the problem could become evident. This can lead to restrictions of social activities, rumors that you’ve suddenly become anti-social or possibly depressed, and to a generally shrinking world.

IS THIS REALLY REAL?

Fatigue, depression, cognitive problems, and pain are common MS symptoms that are also invisible, but in addition, they are hard to measure and are not easily identified in the doctor’s office.

These fall into the category of invisible- made up symptoms. You can poke someone with a pin to see if they are numb, but there is no simple test to prove that someone has MS fatigue.

Because these problems are both hidden from other people and hard to quantify, it is not uncommon for the person experiencing them to wonder (at least occasionally) if they really are MS symptoms or if they are making them up, exaggerating their severity or using them as an excuse.

Some invisible problems such as blurry vision are recognized as abnormal experiences that don’t happen in everyday life unless there is a problem. When something is a recognized and validated as an MS problem, it (we hope) changes other people’s expectations of what you can do, and gives you permission to change your expectations of yourself. 

Fatigue, mood changes, and forgetting things at the store are not abnormal experiences—they are common complications of life on earth. When they occur, it’s hard to tell if they are symptoms of MS or further evidence that you simply are doing too much or not managing your life very well. If you tell someone that you have fatigue, there’s a good chance that they will look a little exasperated and tell you “I’m tired, too.”They may not see your fatigue as an MS symptom but rather an indication that you lack motivation or don’t really want to have dinner with them, and they probably won’t change what they expect from you. When there is no external validation of these invisible symptoms, it can be hard to believe they really are MS symptoms and to modify what you expect from yourself. Instead of recognizing that you probably need to do less, you may decide that you really just need to try harder, stop feeling sorry for yourself, and quit being lazy. 

The identification and acceptance of invisible-imaginary symptoms is also complicated by the fact that they can have multiple causes, some of which stem from MS and some from other sources. You can have fatigue from doing too much, fatigue from sleeping poorly and fatigue from MS, all at the same time. These problems also develop slowly, and people make minor adjustment automatically, so it can be hard to recognize that a problem has grown.

OUT OF SIGHT, OUT OF MIND

There are lots of misconceptions about MS, and one of the most common is that the more visible a problem is, the more serious it is. If a problem isn’t visible, it isn’t serious. It is common to hear someone minimize the impact of invisible symptoms with the statement “I’ve done really well with my MS. I haven’t had any problems at all except some cognitive things and fatigue.” Invisible- hidden and invisible-made-up symptoms are real, actual, legitimate MS symptoms and can be just as life-altering and life-complicating as visible symptoms.

Multiple sclerosis looks different on each person who has it and how it affects someone will depend on what part of the central nervous system is damaged. Some illnesses have patterns of symptoms that develop along a time line, and you can sometimes tell where someone is in a disease course by looking at the symptoms they have. MS is different because it doesn’t “progress” in any particular way and you can’t usually tell, by looking how “bad” someone’s MS is. That someone is using a wheelchair or a cane doesn’t necessarily mean they have “worse” MS than someone who is not: it does mean that the have damage in a different part of the central nervous system. Some people are unable to walk not because they have “bad” MS but because they have a little MS in a bad place.

Another misconception that hinders the physical and emotional management of invisible symptoms is the belief that obvious physical handicaps are harder to manage than invisible problems. Therefore, you aren’t allowed to feel bad or struggle with your problems because someone else’s problems look worse.

But you can’t assume by looking that the problems are worse—you can probably assume that the problems are different. Some people who have primarily spinal cord MS lesions do not have fatigue, so although they might have trouble walking, at least they can stay awake. 

Understanding and believing invisible symptoms is hard enough. Managing them is even worse. Fatigue, mood disturbances, cognitive problems, and pain are complex problems. Each one of them can have multiple causes. 

There are at least a dozen causes for fatigue alone. These problems can also compound and complicate each other. At a minimum, it is important to get a good diagnosis and to treat the right problem. These problems are also complicated to treat. There aren’t many sure-fire, one size works for all solutions, so trial and error is often the way that treatment progresses. Medications are one treatment approach. Life- style modifications are another. A consistent exercise regimen is highly recommended. Most problems respond best to a combination of approaches. 

Chronic illnesses have chronic symptoms, so problems are more likely to be improved than removed. It will probably be easier to find eight partial solutions that each improve a problem by a modest ten percent than it is to find one solution that improves it by 80 percent. If you are struggling, it’s likely because living with MS is a struggle and not because you are doing it wrong. 

Whatever your symptoms, MS isn’t easy to manage. With experience, most people with MS learn to live with it more or less successfully, but it’s not a simple or quick process. Time and ingenuity help. To learn more about how one woman found some creative solutions, read the interview with MS patient Nancy Boyd.

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