This is what being diagnosed with a chronic illness is like:
1st Day: Confused. Never heard of it. What does this mean? Google black hole. What is going to happen to me? Is this information correct? Every day after that for the next few months: Denial, learning in secret and surviving.
It started with falling, losing my balance and I thought if I lost more weight I would fine. I started exercising and it wasn’t working, I started losing feeling in my arm and couldn’t raise it. Went to the Orthopedic doctor who then recommended I see a Neurologist and a series of test ensued. In the meantime, my cousin and I did Weight Watchers, I lost 32 pounds and kept living life. After losing the weight, I began to feel a little better.
At 25 and while in graduate school I was diagnosed with Muscular Dystrophy (MD). I wasn’t telling anyone. Only people who knew were my close family and friends. I would tell prospective employers I used a cane because of a car accident. If anyone else asked I would say I sprained my ankle. I was in total denial. I always walked with a limp and it continued after. Over time I understood that my employer needed to know. There were tasks that I wasn’t physically able to do and had to end up letting them know. It was hard to tell people what I had because I didn’t initially accept it.
6 months after the diagnosis, I was still researching (sometimes the internet is wrong, but it gave me something to do and was easier than talking about it), did a lot of shopping to feel good and get it off my mind. I was shopping all the time to keep my mind occupied. I was still able to go to the gym. I wasn’t involved in any organizations and still thinking, this is not what I have I was still just dealing with a lot of emotions.
When I approached the one-year mark of being diagnosed and now, experiencing the symptoms of MD regularly, acceptance was soon to come. Writing a blog post on Tumblr was my first step to real acceptance. That moment was like my reckoning. I posted it on social media and the response was overwhelming. A lot of people were hearing about the condition for the first time and beginning to understand what I was going through. It’s like my diagnosis became a PTA that everyone needed to know about. It was that year I found out about the Muscular Dystrophy Association (MDA), started connecting with people my age and more opportunities and more. A friend recommended I start using hashtags when posting on social media related to my condition and started connecting with so many people who were experiencing the same symptoms and lifestyle changes. I started going to conferences, meeting more people and being invited to speak at different events about my experience.
Since then, I have continued to stay connected to my local MDA chapter, continue to speak, raise funds and spread awareness. Started my clothing line, Girls Chronically Rock (GCR) and continue hoping for the best. I told my employer just last year that I had MD and am waiting on a response. It took a weight off my shoulder to just be honest with my boss. I feel so relieved. My condition has progressed since then. I am regularly tired, need the use of a cane, still have issues walking and not getting tired and occasionally need a wheelchair.
You don’t know how it feels until it happens to you. I often feel like it controls my life. I’ve considered getting a Personal Care Assistant (PCA) to help with everyday life. My friends with MD have PCA’s, and I am exploring my options as well. I don’t want to put on a front anymore. I’m tired. Taking it day by day. Still doing me. Because everything affects my productivity: my energy, pain, the weather or physical demands of a regular in-person job still offer challenges, but I am confident that I can still be successful at anything I do.
If you are in a place where denial is all you have, consider these steps and get your joy, peace and freedom back:
Maintain your normal routine as long as you can: remember, a diagnosis is not the end of your life. It’s another opportunity to educate yourself on how to still live your best life in spite of any obstacles. Make the necessary changes, but not all at once.
Use the first few weeks to educate yourself: on the symptoms, the best practices, the resources and support groups available.
Reach out to others with the same chronic illness: This is where getting connected to local organizations that can point you in the right direction of condition-specific communities becomes key to getting past the initial shock and follow-on emotions that can come with a diagnosis.
Support Groups: Support groups can give you the on-going relationships, information and wisdom needed to get through living with a chronic illness or whatever condition you may have.
Writing is healing: It wasn’t until a friend recommended that I share my story in a post that I finally came to terms with having MD. It was both freeing and therapeutic to write out my experience. Consider journaling your journey. Your future self will thank you.
It will take time to accept it: Give yourself time. There isn’t a timeline on how long it may take fully accept what is happening to your body. You may need a few days, weeks, or longer. Don’t feel like you have to be “strong,” in order to get through this. It takes more courage to accept and let yourself feel that it does to hide behind phrases like, “I’m okay. Everything is fine.
Understand that this doesn’t mean your life is over: I want to re-emphasize this point to you: life will go on after your diagnosis. Your dreams don’t have to fade. Your goals are still valid. Will how you fulfill those goals look different? For some yes. For some maybe. For others, no. Keep dreaming. Keep grinding. Keep reaching for your best life. This is just another part of your story.
Seek out help to deal with depression: One of the most prominent side effects of any unfavorable or bad news is the symptoms of depression. For some, this is just a natural way we all react when life throws us curve balls and may last no more than a few hours or days. In other cases, sometimes depression (or a what seems like a gray cloud) can hang over us for more than just a few days. More like weeks or even months. Never feel like asking for professional help is the last resort to help navigate through the feelings you may be experiencing. You have a right to be able to laugh, have joy and enjoy life while you process what’s happening to you. Sometimes, we need help figuring out what we can do to help relieve stress and take off some of the pressure we may be feeling. You are worth the time and money to feel like, “you” again.
I share all this to say, there’s beauty in acceptance. There’s a freedom that we gain when we open up to others and no longer have to carry the heaviness of a condition or chronic illness by ourselves. You got this!
At the end of the day, I have no control over this disease, this disease has control over my body. As much as people from the outside try to comment on what people with disabilities can do to heal, please stop, you have no idea what it’s like until you living with a chronic illness every day. Every day I wake up, I see what my body decides what we are going to do and I go from there and take it each it each day at a time.
About the Author
Just a little background on myself. I have Limb-Girdle Muscular Dystrophy (MD); I was diagnosed at the age 24. I was born and raised in Cambridge, MA and went to high school in Cambridge. I received my bachelor’s degree in Fashion Design and Merchandising and then furthered my education in getting my Master’s degree in Business. When I first discovered my symptoms of my MD, it was crazy to me because I started to get symptoms around 2009. While in graduate school I began to repeatedly fall, and my leg would just give out on me without notice. I would fall to the ground and not be able to pick myself back up, I would need assistance from someone to lift me up with all their might, because it was something I just wasn’t capable of doing on my own. I also began notice when I tried to reach for certain things in the kitchen cabinets or try to exercise I was unable to lift my right arm up all the way. I kind of just thought to myself maybe I need to go on a diet and lose weight, but in the back of my mind I knew it something more and after getting all the different testing done, I was officially diagnosed with Limb Girdle Muscular Dystrophy.
Fast forward a few years later, I knew I always wanted to be a business owner and wanted to create something in fashion so I started with a t-shirt line because I always like to wear different graphic logo t-shirts with different writing on them and wanted something inspiring. That’s when I came up with the name Girls Chronically Rock because I wanted it to have some form of the name chronic in it for chronic illness, so I thought of Girls Chronically Rock and I loved it. Now I currently own my own t-shirt business called Girls Chronically Rock which was inspired by myself because I was diagnosed with Muscular Dystrophy and wanted to create something to help motivate, encourage, and let people know you rock and you can accomplish anything you put your mind to. My t-shirt line consists of many different designs/logs with multiple meanings behind it. I add about a few different designs every month or so with a new look to see what customers may like best.
Maybe after a year or so, I plan to start creating my own adaptive clothing which would be for people with disabilities because people like myself find it very hard to get dressed every morning with certain clothing/material and it may take us longer to get dressed than an able body person. The adaptive line will still be under my same umbrella Girls Chronically Rock. I plan to continue to succeed at my business and work hard every day while learning new things about running a business.
Each month 10% percent of proceeds go towards the Muscular Dystrophy Association.
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