The diagnosis of a life-changing and unpredictable disease, such as multiple sclerosis, often brings with it a myriad of initial reactions, including shock, fear, anger, relief, denial, and disbelief. Each of these reactions are common and completely normal.
I often share with newbie MSers that the first year for me was the hardest. Not only because I had two major relapses, each requiring 5-days of Solumedrol, but because of the myriad of emotions slapping me upside the head.
Shock didn’t really hit me as it had been five years since my first occurrence of blinding optic neuritis before I was finally diagnosed. But for some the news can be so startling and puzzling, coming out of nowhere, that it may take days or weeks for the newly diagnosed patient to absorb the news and be able to plan what to do about it.
Fear of the unknown, fear of the future, fear of the impact on your family, financial security, physical abilities, and life - these are common. But the funny thing is, even after you’ve conquered the fears and have developed a plan of action, these fears have a tendency to reemerge at unexpected times. This may sound silly - but embracing the fear will serve to loosen it’s grip on you.
Anger and frustration. It’s not unusual to feel angry. I’ve not met an MS patient who hasn’t expressed anger or frustration at some time. "It’s NOT FAIR!" or "WHY ME?!" or "I HATE MS!!!" Resentment with the uninvited guest is common and almost to be expected. Personally, I’ve said more than once (even if only in my head), "Dammit, I can’t believe that this is happening TO ME."
For some patients who may have experienced bizarre and unexplained symptoms for years, or for patients who feared they had a brain tumor or some other fatal disease, the diagnosis of multiple sclerosis may come as a relief. Relief that there really IS something going on which is more than an imaginary, hypochroniac-induced, "all in the head" sort of non-disease. For some, the diagnosis provides welcome answers.
Finally denial - and kiddos, I’m not referring to the river which flows north through Egypt to the Mediterranean Sea - I’m talking about the desire to ignore the big purple MS elephant in the room, to sweep the MS dust under the rug, or to take a brief "time out" from facing MS head-on. Denial can be an effective coping mechanism following diagnosis and is common when symptoms have subsided and the patient feels "normal" again. But eventually a plan of action needs to be developed and choices need to be made in deciding a treatment plan and learning effective self-care strategies.
All of these emotional responses are completely normal and do not indicate that you’re "losing it." However, if the feelings become too overwhelming or unmanageable, tell your doctor because help is available.
A counselor can help you understand the emotional reactions and guide you in ways to process those emotions. A peer can provide you with the support to know that "YOU ARE NOT ALONE" on this unpredictable journey. And in my personal experience, I have found that simply acknowledging the emotions is the first step in diminishing their power. Give yourself the freedom to feel what you feel and let the emotions flow through you, not oppress you.
Thank you for giving me your support and for allowing me to support you. We are not alone on this journey.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.