Healthy Grieving after an MS Diagnosis - dummies

Healthy Grieving after an MS Diagnosis

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

If you have recently been diagnosed with multiple sclerosis (MS), it is important to give yourself time and space to grieve. You may be asking “What’s grieving got to do with it? I’m still here. MS isn’t going to kill me.”

But grieving is an important — and healthy — part of living with MS. It’s what prepares and empowers you (and those who care about you) to identify satisfying and creative ways to deal with whatever changes MS brings to your life. And even though the process of grieving is different for different people, certain aspects of it are the same for everyone — starting with a feeling of loss.

MS next steps: Recognizing feelings of loss

For many people, an MS diagnosis is life’s first big kick in the teeth. Because people are most often diagnosed in their 20s or 30s, MS may represent the first significant threat to those heady feelings of strength and invincibility that motivate young adults to take on the world. MS can feel like the first chink in your armor and like a loss of control over your destiny. Grieving over that loss is the first important step to managing it.

As if being diagnosed with MS isn’t hard enough on your ego, MS symptoms can also lead to significant feelings of loss. Symptoms that appear and disappear without warning can threaten your feelings of confidence and control.

The best way to sum up the losses is to say that the road ahead, which once looked and felt pretty smooth and straight, now has some unpredictable bumps and turns in it. Just remember that feeling sad or anxious or angry about that is okay.

To help feel more in control, some MS patients start each day with an “MS body check.” It’s a little bit like taking morning roll call to see who has shown up for the day. The roll call may sound like this: “How’s my left leg doing today? Hmmm, are those fingers still a little numb? Am I still seeing two of everything when one would be quite sufficient?”

The body check is their way of sorting out what’s going on with their MS from the get-go so that they can plan their day accordingly.

A word to the wise: People express grief differently. Although crying is probably the most obvious way to express feelings of loss and sadness, anger, irritability, and withdrawal are pretty common too.

MS next steps: “Who am I now?”

You spend a lifetime assembling an image of who you are. A helpful way to think about this is to visualize one of those jigsaw puzzles made from a favorite photograph. Since birth, you’ve gradually added pieces to your puzzle — your personality style, sense of humor, special strengths and weaknesses, and tastes for this and that.

When MS comes along, you suddenly have an oddly shaped piece that needs to be added, and it takes some time to figure out how to make that piece fit into the whole picture. The first step is to deal with the loss of the puzzle as you knew it. The picture you had of yourself — your self-image — now requires some tweaking. In a sense, you need to get to know yourself all over again.

People react in a variety of ways to the task of redefining themselves. Some people “go to pieces” initially — expressing their grief by throwing up their hands in despair and temporarily losing sight of who they are. Others muster their emotional defenses and try to avoid adding the new piece to their puzzle for as long as possible.

Then there are those people who gently nudge the pieces of their puzzle this way and that in an effort to figure out just how MS is going to fit in without jumbling the puzzle too much. All of these are part of the grieving process.

The most comfortable outcome of this grieving process is to find that your puzzle is still intact — to discover that you’re still you, with all the things that make you unique, interesting, lovable, and strong, in spite of the new puzzle piece.

In fact, healthy grieving allows you to put the other pieces in your puzzle to work. For example, you can use your coping skills, creativity, and determination to figure out how to manage the challenges of MS.

Don’t forget that the process is a continuous one: Each time a new symptom appears or the disease alters the way you do things, grieving happens all over again. You’ll be fiddling with those puzzle pieces forever. Of course, everyone (with MS or without) goes through exactly the same process as time, life events, and aging bring about changes. You’ll have the advantage, however, because you’ll already be a pro at the process of adaptation.

In case you’re thinking that every new piece in the puzzle is going to be unwelcome and uncomfortable, here’s the good news: When going through the grieving process, you’ll discover strengths and talents you never knew you had. Solving problems, meeting challenges, and figuring out creative workarounds all add to feelings of pride, mastery, and self-esteem.

MS next steps: Grab hold of the future

Healthy grieving involves letting go of the past so you can get on with the future. From one day, month, or year to the next, your MS may alter none, some, or many of your daily activities. When it does get in your way, you need to be ready to go after your goals in spite of it, and the only way you’ll be able to do that is to be ready to do things differently.

If, for whatever reason, your original goals aren’t possible any more, don’t assume that you can no longer set goals for yourself or your future. Instead, allow yourself to think about different goals or perhaps a new direction.

It’s natural to be sad and angry when things don’t go as smoothly as they used to or when goals have to be changed — that’s what grieving is all about. The next step, however, is to put that emotional energy to use in order to map a new plan for yourself.