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In March of 2016, I suffered a devastating MS relapse. Although I had relapses in the past, I was not prepared for how this one would alter my life. I didn’t bounce back like I had in the past. To this day, I am struggling with the aftermath of that relapse and the disabilities it left behind. The funny thing is, I don’t look that much different. On the surface, everything looks great. I am able to work and contribute financially to my family. I am raising my kids and participating in their lives. Date night with my wife is still a possibility. From the outside looking in, one would not see a significant disease burden because I am high functioning even after all of these years. While we are taught not to judge a book by the cover, most of us do. If you peel back the curtains, however, you’ll see that I don’t feel as great as I look.

Let’s break it down. While I am able to work and contribute, it isn’t on my own terms. The 2016 relapse greatly affected my cognition functioning, memory and creativity. Everyday tasks are now a struggle for me and I have to rely on compensatory strategies to still be effective. While I can still complete projects, work tasks that used to come easy to me now are much more challenging. This all effects my motivation and confidence. I just don’t have the drive that I had before.

I am also able to participate in raising my kids, but not how I envisioned myself as a parent. When I was experiencing the relapse, I wasn’t able to attend my youngest son’s kindergarten graduation. That is just one of the memoires that I missed out on. My boys are nine and 11 now and because of lesions on my cervical spine, I can’t run, wrestle, or play with them the way I had in the past. Most of our time is spent in more sedentary activities like watching movies, watching sports, or playing video games. Although I am thankful for the time that I have with them, I am not the active dad that I always wanted to be.

Lastly, there is my relationship with my wife. No relationship has been affected more since the relapse than that between me and my wife. To be clear, without her, I would be lost and would have given up long ago. She is my biggest cheerleader, always encouraging me to stay strong while she picks up the slack of managing our household so everything in our lives run smoothly. As a caregiver, she has had to learn things like how to inject needles into me, change IV bags and provide levels of care that she was never trained to do. Through all of it, she has never complained. While we still have a strong marriage, MS has forever altered our relationship whether you can see it from the outside or not.

So, while I may look great, the truth is that I am not okay. I have to fight very hard to be the person that I want to be. I wanted to share this with you because many of you have told me that this is the comment you struggle with the most. So, the next time someone tells you that “you look great,” take it as a compliment. You have overcome a lot just living day-to-day with MS, so take pride in looking great. However, don’t be afraid to share the sacrifices you have had to make because of having MS and the burden it has placed on you and your loved ones. Because after all, you can’t judge a book by the cover, especially if you have MS.