MS Connections

One Year Ago

One year ago on World MS Day, I decided to open up and share that I have been diagnosed with Multiple Sclerosis.  I definitely had a few hesitations in opening up and starting a blog. I was nervous about whether I would regret letting the world know that I have MS. I knew that once I put it out there, I couldn’t take it back. I was nervous about being vulnerable or appearing weak. But, I decided I didn’t want to isolate myself and be alone in this. The truth is, many people with MS live in isolation. I have joined a few MS groups and I was shocked to hear how many people are alone navigating symptoms, care, and life with MS. Some haven’t even told close friends and family in fear of being treated differently. 

It just so happens that this year’s theme for World MS Day is #MSConnections. The hope and goal of this World MS day is to help break down the barriers that leave so many feeling isolated and alone. The hope is that people fighting MS can feel connected and supported in their communities. And, it is to help those with MS make self-connections so that they can receive the quality of care that they deserve. 

I know for me, there were some fears in letting my guard down. People might look at me or treat me differently. If I ever wanted to go back into the workforce, would this impact an employer hiring me? Will I always be defined and labeled as the lady with MS? 

First and foremost, the outpouring of support and messages I received when I shared last year was incredible. I was in tears over how many people reached out to me. Some, I hadn’t spoken to since High School. I had a couple of people with MS or with loved ones battling MS reach out to let me know I am not alone. This was so meaningful to me. You don’t have to be best friends with someone to reach out and let them know that they are not alone. I think I received more empathy than I thought I would.

Overall, as I reflect on this past year, it has been a bit confusing when people want to talk to me about my MS. Since I was also pregnant for 9 months, I would get confused on whether people were asking me “how I was doing” with the pregnancy or with my MS. Sometimes I would start sharing about one, and they wanted to know about the other. In fact, one of my aunts found out about my pregnancy when she asked how I was feeling. She came up to me almost secretly, which confused me, and it was while my morning sickness was starting, and she asked me how I was feeling. I looked at her confused, and didn’t answer right away. She almost instantly got wide eyed and figured out that I was pregnant. After my pregnancy was announced I started clarifying with people whether they wanted to know about MS or my pregnancy. Thankfully, this past year hasn’t felt like my MS is the topic of every conversation. I didn’t want that and I am doing well, so it certainly wasn’t needed. However, it has been nice that there are some people who check-in every now and then and ask. Also, I always appreciate when someone tells me they are praying for me. Somehow it gives me this extra bit of hope. Hope that things will be okay. Hope that maybe one day they will find a cure. Hope in knowing that I am not alone and someone else cares for me.

May the God of all hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Romans 15:13

For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.

Romans 8:24-25

As I reflect on this past year, I am thankful that I opened up and started a blog. It has helped me create more connections than I expected. I have been thankful that my MS has been kept at bay and therefore not every single post was an update on my health. When I started the blog, I wasn’t sure if anyone besides my immediate family would be interested in reading my blog. And, honestly, I didn’t start the blog for followers. I knew it would be too much work and maybe even a bit fake if my intention was to get as many followers as possible. Overall, I am thankful I took the plunge and I appreciate all of you that have been following along in my journey so far. Writing is a great way for me to process my emotions and feel as if I am not alone. And, maybe it has helped you not feel so alone too.

As my blog states, I can’t stop, won’t stop s’myelin! Prayers for my upcoming MRI in June are always appreciated.