It’s a big year. This year I will have had multiple sclerosis for as long as I didn’t. I was diagnosed in 2004 and 17 years later, here we are. It all started with some numbness on the left side of my face that migrated to my left ear and down my neck. An MRI revealed my “textbook” relapsing-remitting multiple sclerosis with three brain lesions and seven spinal lesions. This diagnosis put the pieces together for some vision problems I had been having and a strange episode of back pain I had as a 15-year-old.
My “Uncle” Mike was a big part of my life when I was a tween. When I was diagnosed, his wife, Rita, was the only person I knew of who had had multiple sclerosis. She was severely disabled by secondary progressive multiple sclerosis. She passed away due to complications of her disease before I met him. She needed help with almost every element of daily living. I had heard tales of how Mike made sure she ate first, she slept first, her needs were always his priority. He was completely devoted to her and her every need. When I was diagnosed, this was all I knew about multiple sclerosis. I couldn’t believe this was the same disease I had, I was 17.
For the first few weeks after I was diagnosed, my dad and I maintained a steady state of denial. Then all of a sudden, we would just be overcome with grief. I remember crossing paths with him in the dining room and he hugged me. We stood there sobbing, shoulders shaking, clinging to one another. For several minutes we cried together. Then he gave me an extra squeeze, we grabbed napkins to wipe our snotty and tear-soaked faces, and we continued on our paths. No words were spoken. To this day, that is the most healing hug I’ve ever gotten, but I know where to get another one.
My mom has a supernatural power that most physicians develop, they learn to compartmentalize and control their emotions. No matter how fierce the winds of anger blew or how water from tears of grief raged, she was the rock that was stronger than the storm. She instilled that strength in me – lovingly and tenderly and like a badass. This strength is at the core of my ability to see past a setback or a bad day with MS.
The best advice I received was ABSOLUTELY, under no circumstances should I Google MS right away. The Internet has zero reliability to provide helpful, moderate information. I quickly learned that setting the right mindset was paramount. I went to an MS Patient Awareness Day shortly after my diagnosis and it scared the hell out of me. I came away thinking that people with this disease became one dimensional: DISABLED. There were so many wheelchairs, canes, walkers, scooters, and sick people! It did not represent where my disease was at that point. I quickly learned to control my “mindspace” and am still incredibly cautious about what I allow in.
I started a disease modifying therapy right away. I started a vitamin regimen to address a vitamin D deficiency, fatigue, and nerve cell health. Sure, they were daily reminders of MS, but they also made me feel like I was doing something about it. I clung to my horses for mental health and to continue physical well-being. I am an action-oriented person; making this plan was incredibly empowering. Every. Single. Day., I have a plan.
I can’t tell you how often I’m asked, “My [friend, aunt, coworker, nephew…] was recently diagnosed with MS. Would you be willing to talk to them?” I love this question because it makes me feel like my tenure with this illness has created something valuable to be shared with others. I hate this question, it means another person with this illness.
But, of course, my answer is always, “Yes. Absolutely.”
To you, newest member of the MS Club, here is my advice to you. And to you, the person whose loved one just received this news, this is for you too.
Being diagnosed with MS SUCKS! I know that’s the thing you’re not expecting to hear. The fact is it *#!%ing blows! It’s ok to feel this and feel it hard. Remember though, you have MS, MS doesn’t have you. We live in an incredible time with support organizations, remarkable pharmaceuticals, therapy options, anti-inflammatory diets, natural supplements, and the Internet.
Absorbing this news is going to be a process for you and the people in your life. You may feel like you have to be strong, brave, knowledgeable, and assured while you ride the denial, grief, and anger roller coaster. If you decide that you will come to terms with it, you will. You are in charge.
Find your hug – the person who needs no words of explanation. The person who will be sad with you, wipe your tears, and move on with you. Find your rock – the person who will help you find your strength. Learn from her, absorb her strength, and develop your own. Make a plan – take action to feel empowered. Control your input – only allow the necessary information in at this time. The National MS Society has an informative landing page designed just for you.
I am here to tell you, this is not a death sentence. MS is just PART of who I am, but MS is just a part of who I AM. I am also a woman, a wife, and a mother. I am a horse lover, an equestrian, and an athlete. I am a cook, a writer, and an animal-lover. Welcome to the club, I’m here for you.
Note: (This advice is applicable to any diagnosis. Let’s face it, any diagnosis sucks, how much it sucks depends on how invasive it is going to be and how long it’s going to be around. This advice can help with just about anything, I think.)