While I spent six scary days in the hospital getting steroids, MRIs, blood work, eye exams, and a spinal tap, I had many caring people in my life reach out with concern. In a scary turn of events, the neurology team at Mount Sinai sat me down and prepared me for an MS diagnosis. This sent me into all the phases of grief - shock, depression, hope, confusion, gratitude, and disbelief. Right before going to the ER, I took to Instagram stories asking if anyone had experienced an overnight occurrence of blurred or double vision. I received many responses from friends who were trying to help me make sense of this strange symptom. Because of that-- many people followed up asking how my eye was doing. I struggled to find a way of saying "My eye is ok, but I'm not... lol" without sounding crazy. Plus, it takes a couple of weeks to get all the results back from Mayo Clinic so I didn't have legitimate answers for people as far as diagnosis. I'm not a very private person but all of a sudden I felt the need to be.
I was constantly walking a tightrope of wanting to ease the minds of those in my life who were asking for updates while also helping them understand that what I was dealing with was serious. Additionally, I wanted to know the motive; and why each person was asking. Is it my boss looking to see if I will be back at work next week? Are they being nosy? Are they trying to see if I got the Covid vaccine? Is it because they care and are worried? 99% of the time, it's the latter. Though I understood that those who knew about my diagnosis had my best interest in mind, I sometimes didn't want to hear every single opinion on how I should or shouldn't live my life going forward. I listened and tried to be very nice, but when you get a medical diagnosis pretty much everyone in your life is going to want to weigh in on a slew of topics like treatment plans, diet, exercise regimen, water intake, pregnancy plans, lifestyle choices, etc. That can get overwhelming. You are taking in information from not only your doctor but also your mom, your boyfriend, your co-worker, your neighbor who has MS, your friend's, your friend's friend's sister who has MS... you get the point. All info is great to have, but take time and don't be afraid to have boundaries. It is OK to tell people that you don't want to talk about your diagnosis. It is also OK to want to talk about it and immediately create a network! There is no right or wrong way to process a life-changing medical event. Now, I want to make this clear; you do not need to disclose any information ever if you do not want to. This is your life, your body, and your choice. I highly recommend seeing if the benefits of telling those you care about in your life outweigh the drawbacks. I'm a pro/con list kind of girl so I immediately put pen to paper. The pros I came up with are as follows:
Ultimately, it came down to time for me. Once I decided I wanted to be open with the public about my journey with MS, it became about taking a beat to be alone with the facts. I wanted to make sure I was fully educated on my diagnosis before opening the floodgates to questions that I may or may not have answers to. I also wanted to have an official diagnosis which took a couple of weeks due to waiting on test results. What gave me hope while I was scared and alone in the hospital was hearing success stories from celebrities like Selma Blair, MS bloggers that I found online, and my good friend who went through a similar situation. That is primarily why I decided to go public. If I could help another person get through that hospital nightmare when a doctor sits you down and mentions Multiple Sclerosis, then sharing my diagnosis is worth it. If you are in that circumstance right now, please know that the treatments are really good and just getting better. You may need to make a few adjustments, but that does not mean that you will not live a long and exciting life. Welcome to the club.
Because the information on this blog is based on my personal experience, it should not be considered professional medical advice.