NICC Library: Monthly Spotlight: MS Awareness

MS Awareness Month

Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. -National Multiple Sclerosis Society

Multiple sclerosis (MS) is the most common disabling neurological disease of young adults with symptom onset generally occurring between the ages of 20 to 40 years.

In MS, the immune system cells that normally protect us from viruses, bacteria, and unhealthy cells mistakenly attack myelin in the central nervous system (brain, optic nerves, and spinal cord). Myelin is a substance that makes up the protective sheath (myelin sheath) that coats nerve fibers (axons).

MS is a chronic disease that affects people differently. A small number of people with MS will have a mild course with little to no disability, whereas others will have a steadily worsening disease that leads to increased disability over time. Most people with MS, however, will have short periods of symptoms followed by long stretches of relative quiescence (inactivity or dormancy), with partial or full recovery. The disease is rarely fatal and most people with MS have a normal life expectancy. -NIH

Sometimes people need space to process a diagnosis, especially if their MS has physical symptoms that stop them from living the life they're used to. You can still help by holding a space for them to come back to when they're ready.

Let them know how much your relationship means and that you’re still up for having fun together
Instead of going out, arrange to have a meal at home or to watch TV or a film
Keep the contact going through Skype, FaceTime, and social media

People say things they think are helpful, but often they can be irritating without meaning to be. Here are some things to avoid:

“But you don’t look ill.” MS has lots of symptoms you can’t see, like fatigue, pain, heat sensitivity, or problems with balance, memory, bladder, bowel, or eyes. Saying someone doesn't look ill can undermine how they feel.
“Heard about the special diet that cures MS?” There’s no quick fix or cure for MS. The person close to you with MS has probably looked into lots of ‘miracle cures’, and become skeptical about stories in the media.
“I know someone with MS. And this happened to them…” There are different types of MS and everybody has their own unique set of symptoms. MS for the person you know will be very different from how it is for someone else.
“You’re tired? I get really tired, too.” MS fatigue is a feeling of exhaustion so bad you can barely raise your head off the pillow or even think straight. Avoid comparing everyday tiredness with fatigue if you want to stay friends. When you have MS you learn to make your energy last, for example, by keeping cool or resting during the day. You do things at times when you know you have enough energy. Make allowances for this or if someone with MS cancels plans.

Providing emotional support and physical care to someone with MS is often deeply satisfying, but it is sometimes distressing, and — now and then — simply overwhelming. The strain of balancing employment, child-rearing, increased responsibilities in the home and the ongoing care of a loved one can lead to feelings of martyrdom, anger, and guilt.

Both the person with MS and the support partner need to remember that having MS doesn’t protect anyone from the normal ills that can affect us. This is especially important for people with MS who see a neurologist for their medical care.

Information was gathered from the MS Society UK and the National MS Society.