Three years ago today, I knew my life would be very different from the moment I received my official diagnosis of Multiple Sclerosis. Ironically enough, my diagnosis falls on the first day of invisible illness awareness week. Every year, I reflect on this day, how much I have overcome, and my fiancé and I have tried to change this day into a positive celebration.
The true reality of living with Multiple Sclerosis, for me, an “invisible illness.”
I have had numerous experiences of discrimination and fighting chronic pain and fatigue that I haven’t experienced in previous years. It is so important to me to raise awareness for this illness, because of my very own experiences daily and the courageous warriors I have the pleasure of coming into contact with because of my advocacy. I try my best to chronicle my journey, whether it’s a good or bad day, because the reality is that most days, there are major obstacles that chronic illness warriors have to overcome.
When I was diagnosed, I researched this illness, because I felt that knowledge would give me confidence and empowerment. I thought that if I was educated enough, I could outsmart this disease. I knew I could beat it, and I thought I would be able to cure it. Over these past few years, one consistent factor I found was that my MS was not visible to others, because “I don’t look sick.” Since my diagnosis, the fact that I “don’t look sick” has influenced many of my experiences. This past year, I had several experiences with police officers, who approached me about having a handicap placard. I even had a person laugh in my face (on one of my most painful and fatigued days) when I boarded an elevator that was “only for handicap or disabled people.” So many instances, I was expected to explain my illness to a stranger, just to access a parking spot, building, or elevator. I do not use a wheelchair or any walking assistance at this moment in my life, and I hope I never have to cross that bridge. But because I do not look like society’s perception of a “disabled person,” I often receive disparate treatment by healthcare professionals, law enforcement and other public servants. In addition to my “invisible illness,” my intersecting identities often generate further marginalization. My experiences truly fuel my advocacy, because as strong as I have become, these kinds of experiences take a toll on me. I always say no on can ever truly understand until they are directly affected, but I am here to encourage every reader to have a kind and understanding heart to anyone going through something—no matter how strong they may appear. I have learned to help others even if I don’t understand, because I know struggle, and most importantly, I respect their fight.
September 28, 2015 is my third celebration of my personal fight, struggle, and triumphs with MS. It’s a day that I may cry, but I certainly remember to smile. I have been on three different medications. I have had 1 week in the hospital on a steroid treatment to restore my vision. I have had about 20 random hospital visits due to flare ups, I have had mood swings because of medication, my weight has been up and down, I have had days I just could not bear to get out of bed, days I felt lonely, days I felt depressed, and the list goes on. But, what always gets me through each of these situations is my faith, my strength, my positive attitude, my amazing support system, and my patient and loving fiancé. It’s been such a long, unpredictable road, but I am proud of myself for getting through all that I have. Most importantly, I am happy that I am able to inspire so many other chronic illness fighters through my journey.
To anyone reading this that is fighting a chronic illness, or has a loved one with a chronic illness, this is my open letter to you. To my fellow chronic illness fighters, you are strong enough to beat any disease that you feel may be controlling your body. I volunteer myself to be someone to reach out to when times are tough. Keep a positive attitude, do not be afraid to cry, and create a small circle of a support group that can keep your spirits up through anything you may face. To my families and friends who are unsure of how to deal with someone who is fighting a chronic illness, be caring, reach out, try your best to understand, and educate yourself. Being caring does not take much of an effort if this is someone you love. It truly goes a long way. Reach out; it means a lot for someone when you take a few moments out of your day to check on them. Try your best to understand, and if you don’t, Google is such a powerful tool to try to gather some insight in a quick and efficient way.
Thus, my story is not everyone else’s story. I have my own, unique story, but I can understand and fight for everyone else’s voices to be heard. I welcome any advice or support needed, and I hope my story encourages people to be an advocate for people they love who are fighting, because they can’t do it alone. My intersectional advocacy does not stop here, but today, three years ago, my passion to advocate for and help others intensified. L928 is my diagnosis and journey with multiple sclerosis.