I was diagnosed with multiple sclerosis eighteen months ago. I have been nothing short of a train wreck since. I read over and over that the first year is the hardest. It is. I would not have said that at ten, eleven, or even twelve months in, but being on this side of a year, I can begin to appreciate the healing aspect of time. I am still a mess, and I am still grieving my former life. I don’t see the light at the end of the tunnel, but I’m still here and I’m still pushing forward.

The first year after my diagnosis was filled with doctor’s appointments. My primary care physician insisted I follow up with her constantly. My neurologist needed to see me every other month for no reason at all. I was referred to Physical Medicine and Rehabilitation who referred me to an orthopedist where I needed to be seen biweekly for AFO fittings and trials. I was referred to Physical Therapy for one to two sessions a week. My physical therapist referred me to another therapist and then another. After you throw in your routine checkups, lab work, and dental appointments you barely have time to rest before sprinting to the next appointment.

A common factor in all of my appointments was my reaction to speaking about what was happening to me. Over and over, I would sit across from the nurse who roomed me and took my vitals and explain to them why I was there. My voice would crack, my face would flush, my heart would flutter, and then I would cry. The harder I tried to fight the tears, the harder I sobbed. I would dry my face and compose myself just in time for the physician to come in. Again, I would have to explain my symptoms and why I was there.

Over and over, I sat across from one person after another and cried my heart out. I cried as I told them that just a month ago I could hike for miles and miles and now I could barely limp around my neighborhood. I cried as I told one person after another that my idea of fun was a grueling sixty-mile endurance race on my mountain bike and now I could barely pedal up a small, paved hill. I cried every time I had to tell someone how hard it was to hold a pen and write, or hold my toothbrush or hairbrush. I cried when I told them I couldn’t grip weights or hold my arm up long enough in the shower to wash my hair. The list goes on. It didn’t matter what I told them; my reaction was always the same.

I not only had that reaction at the doctor’s office, but at home as well. I spent a lot of time sitting on the kitchen floor with my knees pulled into my chest or in the fetal position on the couch. Pretty sunny days were the worst. I would lie in the house and grieve my former life and things I was no longer able to do. I was in a dark place, and it was only getting darker. I was lost. I was deeply depressed. And I was more afraid than I ever had been.

Most every person on my care team has been more than compassionate and understanding. Not a one of them would hesitate to wave a magic wand and cure me if they had the ability to do so, but at the end of the day, they had done their job and nothing more. It was my primary care physician who went a step further and started questioning my mental health. I knew I was in a bad and dangerous place. She did, too.

To my dismay, I was diagnosed with generalized anxiety disorder. The breakdowns I was experiencing were panic attacks and not bouts of crippling depression. The fluttering in my chest, the heart palpitations, the shortness of breath, and disorientation were all classic signs. She didn’t write off the depressive symptoms but explained to me that what I was most likely experiencing was grief and not depression. Grief is common in people newly diagnosed with MS as we mourn the loss of our former selves.

I left that appointment with a new diagnosis, a new prescription for anxiety medication, and yet another referral to another doctor, this time a psychiatrist. I also left with a lot to think about.

Anxiety disorders are three times more common among people with MS than the general population, same with depression. A common behavior with MS anxiety is avoidance. This means avoiding the behavior that causes anxiety. While I can’t completely avoid sunny days and summer all together, I do find myself avoiding walks in the woods and bike rides with friends. The activities I used to live for that now induce crippling panic. People with MS who have anxiety are also more likely to have suicidal thoughts. While it varies significantly, there are reports that up to fifteen percent of people with MS will die of suicide. While I feel that is (hopefully) a gross overestimate, it gets your attention.

I still have consistent anxiety attacks. We’ve adjusted the dosage of the medicine to where they are better controlled, and I am still able to function during the day. The hope is that the anxiety is temporary, and therapy will help control my thoughts and feelings better than the medicine. That is hard to know for certain as it is unknown if the anxiety is the result of my reaction to MS and my new life or if it is a direct result of brain damage caused by the MS.

I am learning to take it day by day. I am still grieving the loss of who I used to be. I’m not sure how I will move forward, but I’m taking baby steps in that direction. Improving my mental health is a top priority now.