If you asked me how I was feeling the days following my MS diagnosis, I would have given you a list of emotions. Scared (more like, terrified). Mad. Sad. Anxious. Worried. Overwhelmed. Thankful. Yes, you read that last one correctly. Thankful. Let me tell you why.

My diagnosis happened in the blink of an eye. Seriously. I met the neurologist for the first time on a Monday evening, had an emergency MRI later that night, and received my diagnosis shortly after 11am the next day. Less than 24 hours. Even if I go back and include the time between waking up on May 6th with my legs numb and the date of diagnosis, we’re still talking only 18 days. Now, I’m not saying those 18 days were easy. Not even close. Mentally, they were horrible, and physically, they were almost unbearable. The light at the end of the tunnel was finding out quickly what was going on. 18 days? I’ll take it. Especially compared to what others are going through now or have been through previously. Since being diagnosed, I have heard from so many people that went months, even years, between symptoms and diagnosis. Some are struggling with symptoms far worse than mine, and still don’t have confirmation of the cause. No diagnosis means delayed treatment. Delayed treatment means more damage. More damage can mean more disability. See where I am going here? I was, and still am, thankful. Thankful that mine was caught early. Thankful for the chance to start treatment so quickly. Thankful that I may have a chance of delaying or even dodging the worst parts of this disease. So, you will hear me say “thankful” at some point when I talk about being diagnosed with MS. It may be mixed in with a colorful selection of swear words, but it is still there.

As thankful as my husband and I were for a fast diagnosis, the quick turnaround left little time for us to process the news before we were shoved into the unknown world of MS. You would think life-changing news would warrant some “hide under the covers time”, but alas, it did not. Life doesn’t stop for a crisis, in fact, our lives ended up busier than before. Kids’ activities, work duties, meal prep, and other household and family responsibilities were now being juggled with neurologist appointments, lab work, insurance phone calls, drug company phone calls, and steroid treatments. Only a handful of people knew about my symptoms and the subsequent diagnosis – my parents, my in-laws, my brother, my cousin, and one of my friends – but we kept everyone else in the dark. We struggled with how, when, and if we should share the news with others.

I spoke to my neurologist at length one afternoon about what to do and asked for any advice he could offer. He was open, honest, and to the point. He told me to be prepared for anything and everything because people say dumb things. There will be those that have an opinion on how I ended up with MS (they will be wrong), how they know of a cure for MS (they will also be wrong), and how I don’t look like I have MS, so I must not be that bad (again, wrong, wrong, wrong). He told me to be ready to stop someone when they have crossed the line. This is my disease, affecting my life, and it is not up for discussion. Bam. Then we moved on to my work and talked about the pros and cons of disclosing my diagnosis. He was thrilled that my job allowed me to work remotely. He said working from home would be so helpful on days that I might be fighting fatigue, receiving or recovering from an infusion, or needing some peace to concentrate. We touched on a few other subjects, like short-term and long-term disability, FMLA, and accommodations in the workplace. He offered his assistance if I needed anything once I decided what I would do. I’m not kidding when I tell you this man is wonderful. There is no way I could have made it through the last year without him and everyone in his office. If he ever leaves for another practice, I’m following. I’ll be a neuro-groupie, following him around the country with his other patients, because I am sure they feel the same way. Peace, Love, and MRIs, dude.

I decided I wanted to keep my diagnosis to myself for a while, and I would talk to friends and family that didn’t know when the timing felt right. I had so many people I wanted to tell immediately, but I needed to do it face-to-face, and not over text or during a phone call. The problem was, I was still in shock from my diagnosis. I worried about how I was going to start telling others when I still barely believed it myself. I practiced what I would say, and how I would say it, over and over again. I could barely make it through my practice sessions without crying, and those were just me in front of the bathroom mirror. I finally settled on a “script” that I could use for an intro when talking with someone. One of the first people I practiced it on was my therapist. I started our appointment strong, and thought, yeah, I can do this. I will not cry. I will hold it together. I will not cry. I will hold it together. I did not hold it together. And I didn’t just cry. I sobbed and snotted and fell apart for a solid hour. My dress rehearsal didn’t go well. Thankfully, she told me how to pick up the pieces and put myself back together. She asked questions, many that I didn’t even have an answer for yet, which helped me better prepare for when I started telling others. The funny thing is, she also told me that people will say the dumbest things, and not to take any crap from anyone. You would think after having two medical professionals tell me this, I would have expected something was coming. Ya’ll…I would have never, ever, in a million years, imagined I would hear the things I did in the coming weeks and months. Even today, recalling some of the conversations, gets my blood boiling. Wait, what was that you just said? I should write a post about those things? Well, thank you, kind reader of my blog, I believe I will.

In theory, not sharing the news right away sounded good, but we all know how well the best made plans work out. Around the time I was fighting my early symptoms and trying to figure out what was happening to me, things were getting interesting at my employer. A few short months before, the family-owned company I had worked with for more than 20 years, was sold to a much larger, nationwide firm. My boss retired, management was shifting, and rumors began flying. It wasn’t the happiest of acquisitions for many within the organization, so fears were growing. What once was a thriving, comfortable, and engaging environment, felt lost. Tensions were mounting. Power struggles were taking shape. Targets were being chosen – and all signs were pointing to my name popping up as the next lucky contestant on this twisted game show. In the midst of a truly terrifying medical battle that I was secretly fighting, I was now fearing for my job. Know what one of the relapse triggers for MS is? Stress. Want to guess what I was doing 24/7? Stressing. How could I not? Job=Health Insurance. Job=Salary. Job=Security.

I knew what I provided to the company. My knowledge, my work ethic, my drive, and my passion for exceptional work is strong and hasn’t wavered since day one. The small company I started with has grown from a handful of employees in one office in a small North Carolina town, to over 100 employees in 3 states. I was part of that growth, contributing my time and energy, nights, weekends, vacations, anything to help. Blood, sweat, and tears for more than 20 years, many times putting the needs of the company before my own. I knew I was an asset, and surely, they wanted me to stay. Everyone would tell me, “They would never want you to leave!” I laughed every time I heard that because I knew the person saying it had no idea what was going on behind the scenes. I knew what I was dealing with… rather, who I was dealing with. Anything I thought I had to offer wouldn’t stand a chance in the end. The job security and protection I had for the last 20 years disappeared when my boss retired, and the company was sold. I felt like I was being thrown into the middle of the ocean. Without a life jacket. And there were sharks. Everywhere. There’s no way I would survive.

I struggled with what to do. I loved my job, and I was great at it. Until recently, I never thought I would be in a position where I might be a target for termination, but circumstances beyond my control were in play under new management. Circumstances with scary outcomes. My husband is self-employed, which means no benefits, no paid time off, and no income if he is hurt or sick. If I lose my job, we lose so much until I can find more work. How on earth do I start interviewing for jobs when I am newly diagnosed with MS, in the middle of treatment for a flare-up, and then start a job with little to no vacation time or flexibility? The struggle was intense. My husband and I discussed all of our options, and finally, I decided I needed to let my employer know. Maybe, just maybe, all the signs pointing to my demise were wrong, and they would work with me through this diagnosis. Ultimately, that’s what I wanted. To keep my job and move on with our new normal.

I wanted to ease into it with my employer, so I scheduled a time to meet with only my HR Manager first. I would test the waters with her, and from there, possibly tell my senior manager and company president, at a later date. Let me tell you right now, I should have gone ahead and strapped that life jacket on the moment I scheduled that meeting. There wasn’t going to be any testing of the waters. My ass was getting thrown directly into the ocean, and someone had chummed the waters.