Multiple What? Untangling the Perplexities of Multiple Sclerosis.
Who has MS?
It is difficult to know just exactly how many people are affected by MS, because “doctors and hospitals do not have to report numbers to the health department, etc. since MS is not a contagious disease like AIDS or tuberculosis” said Kathy Jensen of the National MS Society.
However, in 2001, it was estimated that there were 350,000 people living with MS in the United States; that is about 1 in every 1000 people (NMSS). About 85% of those with MS have relapsing/remitting MS, while around 15% have progressive MS (NMSS).
Generally, with RRMS, a person’s symptoms may come and go. However, with each relapse, the symptoms can worsen and not resolve completely. Many of them find help to slow down the disease and relapses from various treatments and MS specific prescriptions. For those with a progressive form of MS, they generally do not have remissions as the symptoms progress at various rates. They are not always candidates for medications designed to help a person with RRMS to avoid further relapses and progression.
It’s not always obvious.
It is estimated that about 33% of people living with MS use a wheelchair most of the time. However, 65% percent of people with MS are not working (NMSS). Not everyone living with MS has a disability nor are they disabled. Yet, for those who are debilitated, we need to realize that a disability is not always visible.
Notably, the 1994-1995 Survey of Income and Program Participation (SIPP) found that about 54 million people had some level of disability and 26 million persons were considered to have a severe disability. Yet, only 7.0 million persons used a visible device for mobility (McNeil); thus, 19 million people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
In other words, 73% of Americans with severe disabilities do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses a cane, walker or wheelchair.
Whether or not a person living with MS uses a cane, walker or wheelchair, one of the biggest complaints is that people assume they are “feeling good,” because they are told they “look good.” Many with MS have difficulty working and performing duties of daily living, because of the “invisible” symptoms such as extreme fatigue, pain, weakness, exhaustion and cognitive impairments.
This can be quite frustrating for someone with MS, because despite the way they look on the outside, they may be greatly hurting on the inside. Their symptoms, limitations and damage from the disease are not always apparent from the outside. Debbie, a woman from South Carolina wrote, “I have M.S. and I can not make my husband understand he can not see how I feel” (IDA Guestbook).
What most people do not realize is that MS can cause over 35 different symptoms. Many of these can range from mild to debilitating and from occasional to constant. Here are just a few: Exhaustion, stiffness, numbness, tingling, blurred vision, depression, disorientation, dizziness, in-coordination, acute pain, speech problems, parashtesia, flu-like symptoms, headaches, cognitive difficulties, memory loss, bowel/bladder dysfunction and mild to debilitating fatigue (RMMSC).
Whether or not their limitations seem obvious on the outside, it is vitally important to remember their struggle on the inside. For those who are able to walk, each step to them may be like hiking up a very steep mountain with a severe case of the flu. Moreover, for those who cannot, their wheelchair is not always the only obstacle in which they must contend.
Not all MS patients are alike.
Multiple Sclerosis actually means, multiple scars. These scars are the destroyed myelin, which is a vital, insulating material in the brain and around the spinal chord. This myelin is similar to the insulation around the wiring of your alarm clock. If there is a defect in the wire, the electricity will not be able to travel correctly from the socket to your clock (or as in humans, from your brain to your body parts).
The severity, amount and location of the myelin damage are all factors in the determination of whether or not the messages from the brain are getting to their destination. Thus, even if you know someone else who has been diagnosed with MS, it does not mean that another person should be affected in the same way. One may not have as much scar tissue or it may not be in an area that is as crucial to the central nervous system, than the other.
In some cases, it has been documented where the myelin has regenerated and healed. This can be very positive, as it could mean that the progression of the MS is slowing. Still, the nerves underneath could remain damaged even though the outer coating of the nerves has mended.
One thing that is stressed in seminars and literature about MS is that every patient is different. Each has their own set of symptoms, degree of symptoms and level of limitations. The fact that your Aunt Gertrude is living with only occasional symptoms or ones that are not debilitating, does not mean this is how another person should be.
People living with MS have to make various adjustments at different levels. Some experience occasional symptoms that are manageable with changes in diet, stress, exercise and medications. Some struggle with frequent bouts in which they must make adjustments in their work and schedules at home in order to avoid these relapses. Others endure debilitating pain and fatigue that rarely or never goes away.
During relapse for some patients with MS, even simple household tasks that once were never given a thought can be a challenge or virtually impossible. For instance, simply dusting could have to be spread out into a two-day chore. Even preparing a meal is often a goal that these patients struggle to accomplish.
In all, we must be mindful that telling someone with MS that our Aunt Gertrude has the same thing, yet she is doing well. This can make them feel as if we are implying they must not be trying as hard as they should or they are complaining too much.
Imagine feeling weak, in pain or like you have the flu and you struggle just to lift your arms or stand, knowing you need to do every day things like take a shower, make a meal or wash some laundry. Each day you must pick and choose one or two things to accomplish, leaving the other 100 things to accumulate.
Going out for an errand or social gathering takes even another juggle. In order to exert the energy to do this, many with MS must prepare for the journey by giving up various daily duties. For some, after the excursion, their symptoms often multiply and intensify.
Your friend or relative may experience symptoms from the inside that can be debilitating, even though they appear to be fine on the outside. As a result, we need to learn to listen to them when they tell us they are unable to complete a task or participate in an activity.
We often have difficulty understanding these hurdles, but it is crucial for us to allow those living with MS to make necessary changes according to their limitations.
In order to cope and thrive, they must avoid overdoing and overexertion or their symptoms can worsen. Therefore, it is very important to remember that they know when and what they can and cannot do, in order to manage their MS.
We should not feel as if we need to “cheer” them back to the “way they were before.” Remember, your loved one did not choose to have this disorder and they will fight every day to keep their dreams and desires alive. Most likely, no one would like to be back to normal our loved one. Nonetheless, faulting them for not being able to do things they used to be able to do, could only make them feel as if they are no longer valuable.
In fact, the last thing they want is to give up those activities in their lives that are dear to them. Yet, when they push themselves beyond their limitations, they can become much worse. As a consequence, increased stress, exposure to heat and overtaxing oneself can all cause a relapse, exacerbation of symptoms or even further permanent damage.
The best way to support a loved one in this situation is to allow him or her to say, “no” when they feel they need to, even when we do not totally understand why. If they are repeatedly asked to do what they have told us they cannot handle, this will only add to their frustration, feelings of worthlessness and mourning of their losses. Moreover, they will feel alone in their challenges, because we do not understand or respect their boundaries.
What can we do?
1) Avoid the temptation to make a visual diagnosis by stating, “Gee, you look like you are feeling good.” We cannot see how they feel on the inside, from the outside.
2) Learn to be aware of their symptoms, despite how chipper they may appear during our visit with them. After all, they smile because they enjoy seeing us. They are also trying to keep a positive outlook, despite the pain, not necessarily because they feel good and are doing well.
3) Do not push for them to tell us they are “having a good day,” if they are not. Some have mostly good days and some bad. Some have mostly bad and some good. We should allow them to be honest.
4) Acknowledge what they are going through. It may mean a few or even a whole lot of changes and losses. They do not require our complete understanding, just our belief in them.
5) Respect their limitations. When a person has MS, they must manage their condition by staying within boundaries. Over-doing oneself only can lead to increase in symptoms. We must allow them to say “no,” even if we do not fully understand.
6) Tell them how much we admire their strength and determination. Many times people living with illness are treated as if they are just being weak or lazy. But, if we examine the evidence, we will find someone who actually has incredible courage, strength and perseverance.
How can we help?
How can we help? We can try offering to pick something up from the store when we go, bringing them a picnic lunch, vacuuming their floors, doing a load of laundry during our visit or sending them a note to say we care. They already feel like a burden, so we should not wait for them to call us for help.
Finally, people living with MS do not want pity, they simply need our love and support. We should not worry that addressing their hurdles will discourage them! After all, ignoring what they are facing and trying to downplay it can leave them feeling as if we do not have any idea how what they are going through.
For that reason, we can validate their feelings by listening and acknowledging their concerns. This will give them strength and hope to know we are standing by them. Most of all, when we let them know that we see them as the courageous, strong, determined people that they are, they will fight even harder!
IDA Guestbook, from the IDA Website, 2000.
McNeil, John M., U.S. Department of Commerce, Census Bureau, Current Population Reports, Americans With Disabilities: 1994-95, August 1997
(RMMSC) Rocky Mountain MS Center, Seminar for Newly Diagnosed, March 1991.
(NMSS) National MS Society, Email Interview with Kathy Jensen, October 2001.
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