The Unveiling of My MS
Telling people about my diagnosis was something I really struggled with. I was scared people would look at me differently and that I would be seen as the “sick girl.” My entire life, I have always wanted everyone to think that I’m “okay” no matter how I’m actually feeling; this, of course, carried over to how I initially reacted to having MS.
I was in limbo
My best friends and family knew and supported me through the six months where I was in limbo wrestling with my Clinically Isolated Syndrome (CIS) diagnosis. CIS is used to describe the first episode of neurologic symptoms caused by inflammation and demyelination in the central nervous system. During this time, they were sworn to secrecy. I didn’t want anyone else to find out - secretly hoping it would never turn into MS- and so I didn’t want anyone else knowing anything!
I slowly began telling people
Six months later, it was official: I had MS. I had to decide if I was going to hide from the disease, or accept it and begin living my new life - my new “normal.” This meant telling people - something that absolutely terrified me. Now, I’m not one to write a Facebook status explaining to my 900 closest friends that I was diagnosed with MS. I slowly just started being honest with friends when they asked how I was doing or asked why I had been staying home more.
I took a bigger step towards being an advocate
In May 2014, my friends and family participated in WalkMS in my hometown of Fredericksburg, Virginia, where I currently live. I then took a huge step out of my comfort zone and put a group picture on my Facebook of my support group that walked with us. I began to realize that if I wanted to be an advocate for this disease, I couldn’t wear an invisibility cloak over my MS any longer. The amount of support that I received after I posted that photo was overwhelming. So many people, even those who I hadn’t talked to in years, messaged me saying how they were thinking about me and sending me positive energy.
It wasn't all positive
Now don’t get me wrong, my “coming out” wasn’t completely positive. I had a few people who made some pretty negative comments in response to my condition. One of my closest friends at the time told me, “There is no way that you actually have MS, you’re more likely to have AIDS.” I’m sure you can guess that I’m not as close to that person anymore.
Surrounding yourself with support
I think it’s important to surround yourself with a positive support system during hard times, not people who try and bring you down. Sadly, sometimes that can mean losing some friends who just can’t be the kind of person that you need in your life. I also had a few people ask my friends, “Aren’t you friends with that sick girl? Is she going to die?” I’ve also had to learn what to say when someone responds with, “Oh, my cousin had that, wore a back brace for a few months and is cured!” It’s pretty awkward explaining to people that Scoliosis and Multiple Sclerosis are not the same thing.
The past two years have been filled with emotional changes, growing, and letting go. Part of my acceptance of MS has been telling people that I have this disease - doing so has been extremely cathartic. I’ve had friends that have been amazing during this and supported me more than I could have ever imagined. I also have had to realize that some friends just weren’t what I needed in my life. I started seeing things in a new light after my diagnosis and realizing who my true friends are.
Letting a friend go
I had a really close friend for a few years, but a few months ago, I had to let her go. We became close right before my diagnosis, and we had a lot of fun together, but I started realizing that’s what our entire friendship was: fun. At the end of the day, she wasn’t the person that I could call when I needed to talk about serious issues. She depended on me a lot, and I was more of a big sister to her than anything. Our friendship was so stressful for me and was hurting me more than benefiting me. Her lifestyle just didn’t mesh with mine anymore, and I couldn’t stay up until 4:00 AM making sure she got home safe or worrying whether she was in trouble. I had other things on my mind that she just couldn’t understand and wasn’t willing to try and understand.
Finding your true friends
I was worrying about changing my lifestyle to be healthier, and all she cared about was what party she was going to that night. It literally felt like a break-up, but I honestly can say it was the best thing I could have done. It felt like a weight was lifted from my shoulders. Don’t be afraid to break away from people in your life who hurt you more than help you. It might take something serious to happen in order to find out who your true friends are, but eventually, you will, and when you do, you will be grateful for your decision.
You're allowed to be selfish
My two best guy friends, Nick and Glenn, have been my rocks during this journey. They had been telling me for a while that I needed to stop hanging out with this girl, and when I finally did, I realized how right they were. I needed her to support me and tried to make her realize that the stress she was causing me was negatively impacting my health, but she continued to show me time and time again that she didn’t care. Partying was the most important thing to her, and I was sick of forgiving her over and over. She wasn’t willing to be the type of friend that I needed, and it was clear she wasn’t going to change. It’s hard to realize sometimes you have to end friendships, but if you’re going through something like this, I promise that you will be better off in the end. You’re allowed to be selfish sometimes; you deserve friends who will support you regardless of the circumstances. You owe it to yourself to let go of friendships that cause more you more pain than happiness.
Start with family and close friends
Getting diagnosed with any disease is scary, depressing, and stressful. Trying to hide it from people can put you in a pretty dark place of denial, and it won’t get you anywhere. If you’re having trouble telling people, start with your family and closest friends. Once you know they have your back, it will be easier to tell the rest of the world. Be prepared that some friends just won’t be able to be there for you the way you might want or expect. Don’t be afraid to end friendships with those who don’t seem to care and those who place strain on you instead of help you. We have enough stress in our lives; it doesn't make sense to burden ourselves with friendships that are toxic. Keeping people close to you that build you up rather than bring you down is really important for everyone all the time, but especially when you're coping with something like this.
Realizing who and what I need to keep going
In the end, another positive that has come from my diagnosis is that I’ve done a lot of soul-searching and friend searching, and I've come to realize who and what I need to keep me going (and keep me positive), and who and what I don’t need, too. It's not a matter of weeding through the people in your life and determining who's worth your time and who isn't, but instead pulling close those people who you know make you a better, stronger, more determined person.
I have the hardest time with my MS during the following season: