Happy 5th Anniversary
February marks my five-year anniversary since being diagnosed with MS at the age of 23. As I reflect on this emotional journey, I realize a lot has changed.
When I was going through the CIS/MS diagnosis process in 2013-2014, which as many of us know can take a long time, I had just moved to Richmond, VA to start my first “big girl” job after college. After six months of tests, waiting, and anxiety, I was officially diagnosed in February 2014. I moved home from Richmond to be with my family and close to my doctors (my dad is a neurologist and mom a nurse).
The five steps of grief
The best way to describe how I processed my diagnosis are the five steps of grief, which I have explained before, but for those who haven’t read that blog post, here’s a short summary:
I pretended the diagnosis wasn’t happening. I kept my diagnosis as much of a secret as I could at first, only being honest with my best friends and family members. I was hanging out with my friends 24/7, working at a seafood restaurant with my best friends and partying all the time. I didn’t want to be alone because if I was, reality started to sink in, and I wasn’t ready to face that. Also, my friends were used to me always being the “social butterfly,” organizing parties and hangouts, and I didn’t want anyone to think I was sick or treat me differently.
I got diagnosed just as I was trying to start my adult life – had just moved to Richmond with my childhood friend and accepted my first “big girl” job and all of that came to a roaring halt. I was angry and constantly asking “why me?”
Through research, I started wondering maybe if I was healthier in high school and college, this wouldn’t have happened. Maybe if I didn’t drink as much in high school or eat gluten during college, this diagnosis wouldn’t have happened. So, I decided to turn Paleo (minus alcohol) in the hopes of stopping this disease somehow – this lasted a few months before it just became too hard for me. Kudos to those that are able to live this lifestyle.
My friends and I all got new jobs – no longer working at the restaurant made it harder for us to be together all the time, which is when I had to face the diagnosis head-on. I felt lost, sad, terrified, and alone, not knowing what was going to happen down the road.
After some serious self-reflection, I realized the person I was and had been for the past two years, was not the person I wanted to be. I have always been someone that found happiness through helping others and have a true passion for writing, so I decided to start blogging about my journey in hopes of helping others and healing myself.
Figuring out a happy medium
The first stage of my grieving process, denial, began during my CIS diagnosis in August 2013 and my acceptance slowly started towards the end of 2015. Now don’t get me wrong – I didn’t wake up one morning with a smile on my face, look in the mirror, and say “wow I have accepted this incurable lifelong disease diagnosis. I’m going to be okay” but my outlook did start to shift. I went from denial and ignoring my MS to letting my MS control my lifestyle and diet, and now I’m finally figuring out a happy medium.
I was in denial and didn’t want to think about having to change my diet because of this diagnosis. A few months later - after several books, countless hours of research, and a few documentaries later, I decided to give Paleo the good ol’ college try. It’s founded on the concept that humans cannot handle highly processed foods and focuses on naturally found foods such as fresh meat, wild caught fish, nuts, veggies, and fruits but excludes dairy, grains, legumes, potatoes, and all processed food. With the hopes of reducing inflammation, strengthening my immune system, and slowing down my MS progression – I dove head first into this caveman diet. I would spend hours every day preparing, cooking, and baking, just to sustain this lifestyle (not to mention how much money I spent on this.) This was short-lived, it was about 3-4 months before I caught myself sneaking boxed crackers and store-bought bread. I realized that this wasn’t sustainable to me. I’m a young adult with a full-time job with a social life, and I just couldn’t spend hours every day cooking.
I do believe that diet is an important factor when living with MS but I just had to find that middle ground. I now maintain a pretty healthy diet that I can afford while enjoying the occasional (okay, more than occasional) junk food. My boyfriend and I make sure that most of the meals we eat contain the vitamins and nutrients that I need. We tend to eat healthy during the week and get a little wild on the weekend. While weekdays usually consist of veggie egg muffins, wild salmon, chicken breast, salads, veggies, and quinoa casseroles - I can almost guarantee if you ring our doorbell on a Friday night, you’ll catch us with a delivered pizza pie! This isn’t a diet that we have to force ourselves to live by, it’s a lifestyle that works for us and keeps me feelin’ good!
All I wanted to do was hang out with my friends, party, drink, and do everything possible to not face my diagnosis. Even if I was tired or didn’t feel well – I would still go out with my friends because I didn’t want anyone to think of me differently with my MS and look at me as “sick.” This meant forcing myself to go out with friends even if I didn’t feel up to it.
I’m comfortable being honest with my friends about how I’m feeling. If I have plans with friends and I’m exhausted or don’t feel well, I have no problem saying, “Hey, I’m so sorry I have to bail tonight but I am exhausted and just need to chill out.” Everyone in my life understands I have MS and doesn’t hold that against me.
I’m the Special Events Manager at a historic home and art gallery, averaging about 100 events per year, which means a lot of stress, heavy lifting, late nights, and long hours.
Before getting diagnosed, I never asked for help. I would move, stack, and unstack 100-150 chairs, 20 heavy tables, and set up for events without asking a single person to help me. When I got diagnosed, I wanted to keep up this work ethic. I never wanted to bug someone to help me with my job because 1, I didn’t want to seem incapable or show any weakness and 2, everyone else has a lot to do too! During the prime event seasons, I work anywhere from 40 – 80 hours per week, and a lot of the time working alone. I would get SO stressed and exhausted working these hours, but I kept doing it without speaking up because I was so determined to not seem like I needed help. A perfectly healthy, young adult would be exhausted working the hours I was working and I was juggling MS on top of it... it wasn’t a pretty site.
I’m still learning how to ask my coworkers for help, but I’m getting better! If I have a big room set up that I know is going to be extremely labor intensive, I ask the guys at work for help, and they are more than happy to give me a hand. If I have an event that is going to have me working from 7 AM – 10 PM, I’ll ask a coworker to help out by opening up the venue for caterers or watch the event while I take a quick hour nap. Everyone is so helpful, I just need to swallow my pride more and ask for assistance when I need it.
When I first got diagnosed, I was so embarrassed, ashamed, and terrified. I didn’t want to tell anyone, talk to people about it, or admit that I had it. I told my close friends and family first, but they were sworn to secrecy. The last thing I wanted was for anyone to think or see me differently, I just wanted to be “normal.”
After about two years, my embarrassment and attitude started to shift. I decided that instead of hiding this lifelong disease, I wanted to accept my MS and support others going through the same thing. I no longer hide my MS and am not ashamed to tell anyone about it. My MS journey has made me stronger as a person and that’s something I’m proud of and no longer hide this big piece of who I am.
Writing this blog brought back a lot of emotions, both happy and sad, about how I’ve navigated my MS journey and have far I’ve come with accepting my new normal. I have learned that it’s okay to ask for help when needed and that supporting and advocating for MS, both mine and others, has helped me heal and move forward with my new normal. Happy 5th Anniversary, MS.
How many specialists did you see before finding "The One"?