Everyone’s initial reaction to getting a multiple sclerosis (MS) diagnosis is going to be different. Whatever you’re experiencing, whether it’s shock, denial, anxiety, anger, or even relief (or some combination of all of these), keep in mind that these reactions are normal, and that you — and those who care about you — are going to reexperience some variation of them whenever MS brings new symptoms and challenges into your life.
As tempting as it may seem, trying to ignore these feelings or keep them under wraps will just make it more difficult for you to begin taking care of yourself and your MS. The following sections help you recognize and deal with these common reactions to an MS diagnosis.
MS and Shock: “What just hit me?”
Shock is a pretty typical first reaction. But, it generally doesn’t last all that long because the day-to-day realities of symptoms, doctor visits, tests, treatment decisions, and insurance companies tend to drive the diagnosis home pretty quickly. If you experience this reaction, cut yourself a little slack and recognize that you’re going through a stressful time. Take a little breathing time. After you’ve relaxed a bit, start the process of finding out what you need to know about MS, and then mobilize your support team.
MS and Denial: “This isn’t happening”
Denial, that uncanny ability humans have to avoid feelings and thoughts that feel too hot to handle, can feel wonderful. It’s what allows people to plow ahead and live their lives in spite of whatever awful problem is confronting them. Without some healthy denial, a person newly diagnosed with a chronic disease like MS may just feel like giving up and giving in to whatever the disease has in store.
A reasonable dose of denial can be a good thing. If you’re curious what a reasonable dose is, think of it this way: It’s simply the amount that allows you to think about your MS without jumping to the conclusion that life as you know it is over and that all will be doom and gloom.
On the other hand, denial can get in the way. It can stop people from learning about the disease, from making thoughtful treatment decisions, from planning effectively for an unpredictable future, and from talking openly with loved ones about ways to support one another.
Because 75 to 85 percent of people are diagnosed with a relapsing-remitting course, denial can be tempting. For example, following an episode of heightened disease activity and uncomfortable symptoms, a remission comes along. You feel fine — just like your old self — and you desperately want to believe that the doctor was wrong and that you don’t have MS.
But, keep in mind that the approved MS medications are most effective early in the disease. You may not be feeling any symptoms, but the disease is active nonetheless, and permanent damage to nerve cells can occur even in the earliest stages of the disease.
In fact, recent magnetic resonance imaging (MRI) studies have shown that even the white matter in the brain that appears normal on brain scans isn’t really normal — the disease has begun to alter it.
So, the point at which you’re tempted to try and forget the whole thing is the very time when medications can begin reducing disease activity and the risk of permanent disability. In other words, act now; don’t bury your head in the sand.
MS and Confusion: “Why me?”
When bad things happen to you, wanting to know why is natural. Particularly because the cause of MS remains a mystery, people are quick to wonder if something they did — or didn’t do — made them get MS.
Neither you nor anyone else did anything to make you get MS, and neither you nor anyone else could have done anything to prevent it. Unfortunately, MS is just one of those unfair and painful things that can happen to anyone — and for no good reason at all.
MS and Anxiety: “What’s going to happen to me?”
The fact of the matter is that you’ll be wondering from now on what your MS has in store for you. You’ll ask yourself and your doc: “What’s going on with me today — and what’s likely to happen next month or next year?”
The anxiety that surrounds the unpredictability of MS typically begins long before the diagnosis — when a person begins experiencing strange symptoms — and continues until that person develops a mindset to deal with the unknown. The trick in dealing with your anxiety lies in finding a balance between taking each day as it comes and taking steps to protect your quality of life regardless of what the future brings.
MS and Anger: “This just isn’t fair!”
Although anger is a normal reaction to a life-changing disease, the challenge with MS is to figure out where to direct that anger. Initially, you may feel angry at the doctor for diagnosing the MS without offering a cure, or at some higher power for letting it happen. Over time, you may resent the pharmaceutical companies for the prices of their products, the insurance company for denying your claims, or your town or workplace for not being more accessible for someone with a disability. The list can get pretty long.
When all that anger doesn’t make your MS go away, it can spill over into other areas of your life — for instance, with your partner, your kids, your colleagues, or even your closest friends. So begin to figure out how to put that anger to work. Using anger positively allows you to focus and fuel your coping strategies; it can energize your efforts to find answers, solve problems, and overcome obstacles that get in your way.
MS and Relief: “Finally! Now I know what’s up!”
For anyone who isn’t experiencing relief following the MS diagnosis, this reaction probably seems impossible. But, for those people who were told to consult a mental health specialist because their mysterious symptoms were “all in their head,” the diagnosis comes as a welcome validation of the symptoms — either physical or cognitive — that they have been living with. Finally they can get the treatment and support they need.
And for those who thought they might have a brain tumor, ALS (Lou Gehrig’s disease), or any number of other frightening things, MS is greeted as a much better option.
Even though a feeling of relief is comfortable for now, don’t let that feeling get in the way of doing what you need to do — like making important treatment decisions and beginning to figure out how to fit MS into your life.