The psychological effects in multiple

sclerosis
The causes of mood, emotional and behavioural changes in people with MS are not well
understood, and a variety of factors can contribute to them.

These factors fall into two broad categories - those that are directly related to, and not directly
related to, MS.
Its often difficult to pin down a specific cause for a specific symptom, as its more likely that a
combination of factors is involved.

Factors directly related to MS

MS-related nerve damage
The brain controls both conscious and unconscious actions by sending messages to all parts
of the body. Different parts of the brain control different things, and the frontal lobe is responsible for
the control of emotions and their outward expression.
Regardless of your personality, nerve damage in this region of the brain can affect the way you
feel or react, and can cause you to behave in a way that seems out of character.
Psychological reaction to MS
Being diagnosed with MS, coping with, and adapting to the changes and uncertainty it brings,
can be very unsettling. It may lead to a whole array of emotions such as grief, anxiety, guilt, fear,
irritation and anger.
There is no right or wrong way to react, and reactions to the condition will vary greatly from
person to person. Your own reaction will be influenced by how MS affects you, the symptoms you
are experiencing and how you usually cope with what life throws at you.

Factors not directly related to MS

Individual personality differences
Certain emotional and behavioural characteristics may have always been part of an
individuals personality and may have been obvious before their MS. Also, some people, regardless
of an MS diagnosis, are more susceptible to depression and other emotional changes.
Depression
It is worth remembering that depression is something that affects people without MS as well.
Some people with MS who are depressed may be experiencing depression for the same
reasons that people without MS experience depression.
Social circumstances
Social, financial and domestic circumstances can also influence emotional health. If this is the
case, you may need to make some practical adjustments and seek additional help or support.
Side effects of drugs
Most drugs have potential side effects, and some drugs commonly used to treat MS and its
related symptoms can cause temporary changes in mood or behaviour in some people. For
example: steroids, used to treat relapses, can cause hyperactivity or depression and, a steroid
high often becomes a low when treatment ends.
Modafinil, used to treat fatigue, can cause anxiety or depression. Certain other drugs, such as
Baclofen, used for spasticity, can cause unpleasant hallucinogenic symptoms, agitation or altered
moods if treatment is stopped suddenly.
For this reason, when stopping medication some drugs need to be phased out over a few
weeks.
Not everyone will experience these side effects, and many people successfully use these
drugs to manage MS symptoms.
If you think you are experiencing side effects, consult your doctor who can reassess your
medication.

Coping with diagnosis

Doctors might have already talked about MS as a possible explanation for your symptoms, but
equally it might have been a 'bolt from the blue'.

For some people, being diagnosed with MS can be overwhelming, frightening, and distressing.
For others it can be a relief, especially if they've had symptoms which couldn't be explained. Others
might shut down emotionally.
Often, it's a combination of all the above.
Getting the diagnosis could raise as many new questions as it answers, and reactions will vary
from person to person and over time.
Try to remember:

it is different for everyone

there is no right or wrong way to react
however you do react, it is part of a normal process
MS may mean you have to make changes over time, but you are the same person you have
always been.

MS diagnosis - the roller-coaster ride

One way of understanding the initial reaction is to look at it like a rollercoaster ride.
At first there is fear and anticipation. Once you're seated there's the realisation that you can't
turn back. Then the ride then begins and you go through different emotions - there are highs and
lows.
Some people are able to cope with the ride and others find it too frightening.
It's not only the person given the diagnosis who might go through these reactions, but also
those around them.
Each family member and close friend may react differently. For example, the person with MS
might feel relief, while their partner is in denial. This experience is very common.

Telling people you have MS

Getting started
Telling people that you have MS can be a very difficult thing to do. Accepting the diagnosis
yourself is hard, let alone having to break the news to others.
Being able to open up about something sensitive takes courage and practice.
If you find it hard talking about personal issues, there are techniques that can help. Try writing
down what you want to get across to the person you are telling, or doing some role-playing with
someone you trust beforehand.
Dealing with adversity can strengthen a relationship, as well as cause difficulties.
Many people with MS say they remember this as the time when they found out who their true
friends were.

Who to tell

"It is a very personal thing, your health, but I don't see why I shouldn't be upfront. I'm not
embarrassed about my MS, it's a fact of life."
There is no reason why you should feel pressured to tell everyone you know that you have
MS, or share that information immediately with strangers. Your health is a personal thing, and only
you will know how you want to handle things.

However, if people are aware of your condition and how it affects you then they may be better
placed to offer their support if and when you need it.
Many MS symptoms such as fatigue are not outwardly visible. It can be difficult and frustrating
trying to explain to people how you are affected and how debilitating the symptoms can be.
You may find it helpful to direct people to the MS Society website to have a look at different
symptoms and how they can affect you, this will save you having to explain everything yourself.

Dealing with different reactions

People may deal with the news in a number of ways. For you, the way they deal with the
news may be helpful or not so helpful.
Some people may panic whilst others will be surprisingly calm.
People who don't know much about MS will have lots of questions that you might not be able
to answer. They might assume that you're an expert on MS when in fact you know little more about it
than they do.
Other people may avoid you because they don't know what to say. They don't know how to deal with
you having MS, so they choose not to. This can be very hurtful, and it's hard not to take it personally.
Some people will go out of their way to help. This may have the opposite effect, making you
feel frustrated or even useless. Try to explain to the person that you will ask for their help if you need
it, but that you want them to treat you the same as they did before they knew you had MS.
Whatever a person's reaction, talking about it with them can be really helpful.
Try to look at people's questions objectively and don't take them personally. Encourage people
to talk openly to you about your MS and about how it makes them feel.
Often, you can only do this once you have come to terms with the diagnosis yourself so only
talk to people when you really feel ready.

Telling your family you have MS

Telling your parents

"My mum wanted to wrap me up in cotton wool when I told her. I really appreciate my family's
support. I just want them to realise I can still do stuff for myself."
Grief and worry are normal emotions after such a big bit of news. Parents, after all, tend to
worry about their children, even long after they have grown up.
People with MS often say their parents felt guilty after their diagnosis believing that they had
somehow 'given' them the condition.
Try giving them information about MS to look at in their own time and then give them time and
space to digest it. It can also help to be open and willing to discuss any questions and concerns they
may have.
Your parents have probably been with you through the ups and downs of your life up until this
point, and this is just another part of the journey.
Often, people take their cue from you on how they should act.
It might be helpful to consider how you would want your parents to react if it were you in their
position.

Telling your partner

"The hardest thing I've ever had to do was tell my partner that I had MS. How could I expect
him to understand and support me when I hadn't even accepted the truth myself?"
If you have a partner, then your MS will change their life as much as yours. This can be
worrying for both of you and they might need your support as much as you need theirs.
It helps to remember that it will take time for your partner to absorb what you have said.

If youre telling your partner a while after your diagnosis, think how long it has taken you to
accept your illness. If youve been recently diagnosed you will probably have a lot to deal with
yourself before you feel able to take on your partners worries and fears.
Try to think about telling your partner as the start of a discussion. A lot more communication
will be needed over time.
Remember you can't predict the future. All relationships have their ups and downs, and any
number of things can bring them to an end - or not. As with all issues that affect couples during their
relationship, communication and understanding are vital.

Telling your children

A lot of people worry about how to explain MS to their children, and how they will take the
news.
You are the best judge of how, when and how much to tell your child about your MS. You know
them best, and you know how much information theyll be able to deal with.
Kids will naturally have questions, feelings and concerns. You should encourage them to share
these with you. Remember they can be much more resilient and accepting of lifes changes than
many adults.
Every child will react differently to the news, but children often worry:

that they have caused the MS

that it is contagious and they will catch it
These worries can create a lot of anxiety for children.
Child psychologist Lisa Happ offers these tips for talking to children:

Choose a time of day when your child isnt tired or distracted

Make sure you can look them in the eye and gauge their reaction (a car talk is not ideal!)
Give them a conversational warning, such as, 'We have something important to talk about'
Dont feel you have to tell them everything about MS all at once: state the basics, then
answer questions
Its OK to say, 'I dont know, but Ill try to find out,' to any question
Use medical terms, and explain them. Express confidence in the doctors and your hope for a
normal life
Explain what changes your MS may make to your childs routine, if any
Check in from time to time to make sure your child understands and feels supported

Resources to help explaining MS to kids

There are lots of free resources out there to help you explain MS to kids:

Two MS Society books for younger children: Our Dad Makes the Best Boats and Our Mum
Makes the Best Cakes giving a reassuring but realistic picture of how families deal with MS
A short series of YouTube videos, called Annie & Dan Talk About MS, which explains MS in
a way that young children can understand
The MS Trust also produces information which you may find useful, including a booklet
called Talking with your kids about MSwww.mstrust.org.uk
'Keep s'myelin' is a magazine for kids from the American MS Society. It has interactive
games and information aimed at children, and explains MS to them. The website also has networks
to enable teens to talk to each other and form supportive groups.