When You're First Diagnosed: Managing the Initial "Attack"

Shock. Disbelief. Confusion. Relief at having an answer. Depression. Anxiety. Fear. Feeling betrayed by one’s body. Loss of control. Feeling unsafe. Why me? I’m sure many of you who were diagnosed with MS and are reading this, recall feeling at least one of the listed emotional experiences when you were told you had this disease. Hopefully when this diagnosis was transmitted, you had someone in the room with you to help you process what was being said, to serve as your ad hoc memory stick, so to speak, (since there was no possible way you could really hear much more than “yes, you have multiple sclerosis”), to hold your hand and tell you that everything was going to be okay...even if you felt, at the time, that your world had just fallen apart. You might not have been able to speak. You might have prepared many questions to ask the doctor, but were finding yourself unable to recall any of them at the time of your appointment. When given the opportunity by your doctor to inquire about what’s next, and what this diagnosis really meant for you—you probably were at a loss for words.

Depending on your symptom picture and your brain/spinal cord lesion activity at the time of diagnosis, your doctor likely wanted to discuss medication options with you, asking you to consider one or several of the available treatments, encouraging you to make a decision as soon as possible. The medications are meant to slow down disease progression and your physician probably wanted to help you manage your illness in the most proactive way possible. However, at the time of diagnosis, your head was likely spinning in all directions and the thought of making a decision as important as medication may have seemed impossible to you. And that’s okay.

What I want to emphasize is that it is perfectly normal and acceptable to feel overwhelmed and shut down when you have been informed you have MS. It is a life-altering piece of news...NOT A LIFE SENTENCE, but something that will take time to digest, internalize, accommodate to and incorporate into one’s life in a way that can be quite manageable and productive. In my opinion, it is important, if not vital, to give yourself some time to reflect on what has been said to you by your doctor before any next steps are taken...to determine what you actually were able to hear and attend to, versus the information that did not penetrate. With this said, once you find yourself a bit more grounded, I would suggest seeking out ways to ask or re-ask questions about MS...particularly YOUR MS, UNTIL you feel more secure in understanding what is happening in your body, what your options are for medical and self-care and what kinds of resources are available to you to facilitate this NEW experience being incorporated into your life in the least toxic way.

I often hear patients talking about how they feel "out of control" following diagnosis, how their bodies seem to be acting as independent agents and how frustrating and helpless they feel as a result. Despair and hopelessness seem to take center stage. I completely empathize with this experience, affirming the importance of feeling empowered and having a sense of agency over decisions and the path one chooses.

MS has a way of making people feel disempowered - yet giving yourself some time to work through the initial shock of being told you have MS, finding ways to ground yourself vis-à-vis asking questions, seeking information in a manageable (not overloading) way, reaching out for support from existing networks or new resources...ALL of these actions have the marvelous capacity to help one feel stronger, more engaged with one’s body and generally more empowered over decisions in ways that can make living with MS possible...and perhaps even acceptable, even if at the time of initial diagnosis that idea seemed inconceivable.