Emotional changes after a diagnosis of Multiple Sclerosis
It’s not so long since an MS diagnosis offered nothing more than being told to go home and learn to live with it. Indeed Dr Labe Scheinberg, acknowledged by many as the father of MS care, coined the phrase “diagnosis and adios” to describe this time. (Labe died in February 2009 at the age 0f 78) Fortunately things have changed now and there are a whole host of management strategies to adopt in order to find your way through this quagmire of changes you are now forced to confront.
One of the first things is that a chronic illness does not conform to most people’s prior experience with illness. MS does not go away. Nothing is the same and you can’t tell how different it is going to be from one day to the next. This unpredictability makes it difficult to make plans and decisions.
MS changes us. It causes us to rethink our plans, goals, dreams and aspirations: some changes may be relatively small but some are very significant, and affect several areas of our life.
Let’s take an apparently simple thing like socialising
MS can complicate socialising. The practical difficulties of getting out and about can affect friendships. The different lifestyle led by a person with MS may mean that some friendships are lost or changed, and there may be fewer opportunities to make new friends.
“You feel like being around people but find it hard. I can tolerate a couple of people but if I go into a room of 30 to 40 people I just feel like I need to get out of there and go home.”
We all have a sense of self, of “who we are”. It can refer to how we perceive ourselves, the kind of work we do, the activities we are involved in, the friends we have, and our place in a family that we care about. MS can play with this perception.
MS is not going to kill you but it is important to go through the grieving process of dealing with loss of the life you once had. Take control of the uncontrollable. Now this sounds la bit like holding the w aves back from the shore but there is a lot you can do to live moiré comfortabley with this unpredictable disease.
- Educate yourself :The more you know the better prepared you are
- Create your support networks : you don’t have to do it alone
- Start your treatment ea
rly: There is no cure but several medications have been shown to slow the disease progression. - Learn your own cues: For example does heat make your symptoms worse? Can you concentrate better earlier in the day? Are you sensitive to cold? When is your energy ay it’s best? Does it take you longer to do things than it used to? Share all these facts with those around you as nobody is a mind reader
- Always have a back-up plan: Every big plan should have a backup. One day you’re raring to go and the next you’re weighed down. Get into the habit of thinking of alternatives just in case fatigue kicks in, symptoms flare up or a relapse happens.
- Tap that ang3er and frustration: Just reorganising your kitchen to make it easier for yourself or do something big like advocate for the rights of peoples with disabilities or add a comment to this psot and share with the others who come here, It all makes a difference
Summing Up
After being diagnosed, and as you manage your MS, it may be that your emotions and confidence are all over the place. It is very important to have good support networks to help you adjust, and to help you create new plans, goals and aspiration that are compatible with having MS.
The best piece of advice is don’t go it alone. Talking to others is crucial. It is important to have someone with a ready ear and an understanding of what you are going through.
Likewise, it is important that people with MS keep communication open between themselves, and others affected by their condition. This includes family, friends, medical professionals and caregivers. Effective solutions often depend upon a united approach to resolving the problem.
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