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. Overtime I understood that my employer needed to know. There were tasks that I wasn’t physical 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:
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- 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 than 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 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 untillyou 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.”
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Published by girlschronicallyrock
I was born and raised in Cambridge, Massachusetts. My personality is friendly, strong work ethic, and great professional skills that makes her the hustler she is today. I graduated from Framingham State University with Bachelor’s in Fashion Design and Merchandising, a year after I graduated from Cambridge College with a Master’s degree in Business Management. While earning my degree I gained invaluable experience in the business/financial and Fashion Industry with working at different departments at Cambridge Savings Bank and many merchandising companies such as Motherhood Maternity, Tommy John, Spanx, Echo Design and Fossil Group.
While in Framingham State University, I was in the Fashion Club and Black Student Union Club where I was able to meet new people and gain and learn a new experience in both groups with a different diverse of people. I knew I always had a passion for fashion from in middle school and new I wanted to be a Fashion Designer. I looked up to Fashion Designers like Kimora Lee Simmons and Betsey Johnson. I love their unique different styles and just two successful entrepreneurs who are making it in the fashion world and continuing to grow. My dream is to possibly meet both of them one day, even maybe do some business together.
At the present time, I am working as a Merchandise Coordinator for Tommy John inside of Macy’s and Nordstrom within the Boston Area. I also owned my own t-shirt line business called Girls Chronically Rock which was inspired by myself because I was diagnosed with Muscular Dystrophy back in graduate school so I wanted to make something inspirational, motivating for people who may have a chronic illness like myself or may be battling anything in their life, to let them know that they rock no matter what. With the wonderful work experiences over the years, I am really just an easy-going person where sometimes I love to be at home watching lifetime movies or many of my tv shows that I love to watch on a daily basis. I like spending time with family and friends whether its traveling, going out to eat and going to special events.
Through my education and work experience, I have gained the knowledge and skills necessary to excel as a Fashion Designer and Visual Merchandiser. I am both qualified and eager to strive at my business Girls Chronically Rock and continue with dedication, and I know my hard work will pay off and I will reach my goals. I will soon hope to have my t-shirt line sold in department stores such as: local boutique stores, Macy’s, Karmaloop Foot Locker and many more.
Here is a little more in depth detail about how I was diagnosed with Limb-Girdle Muscular Dystrophy:
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.
So I went to see an orthopedic, but I was told that this was more of a neuro-muscular issue, so I then went to see a Neurologist. Once I saw the Neurologist, she then tested me and gave me muscle biopsy, MRI, an EMG and every other test you can think of. So after multiple tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy. Limb-Girdle is a form of MD that affects the limb of the shoulders all the way down to the legs, which progressively over time eventually gets worse.
The first thing I thought was how long am I going to live will I be in a wheelchair soon, and what is my life going to be like from now on. I knew I had to be strong and continue to do what I have to do so I started doing some research on it and read what eating healthy and exercising would help. I joined weight watchers with my cousin and I lost over 36 pounds and I felt great. I’ve able to keep half the weight still off, and I am still determined to lose more.
They have multiple types of Limb-Girdle Muscular Dystrophy, and 5 years later my doctor’s are still trying to figure which type I have exactly. The only thing they know at this point is from the types I may have can affect my heart which is why I often have to go get a echo-cardiogram test that tests my heart to make sure everything is ok.
Living with Limb-Girdle Muscular dystrophy is still new to me every day. I wake up every day not knowing how my legs are going to feel or what pain I may have when leaving my house. I try to be very careful when walking because I don’t want to fall, because I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain amount of hours, my legs start to weaken. I am currently a visual merchandiser at different locations a very popular clothing store. I enjoy my job because it keeps me and my legs active and I enjoy traveling to the different store locations and doing what I love and my part in the fashion industry.
I have the wonderful support from my family and friends but at the ending of the day, they have NO IDEA what I go through on daily basis or what I’m feeling. I try to explain to them how my legs feel, but it’s just so hard to explain. I still go out and enjoy my life as normal, but sometimes I always have certain things in the back of my mind.
When going out I find myself researching about where I am going first, like does this place have stairs?, does it have an elevator?, do they accommodate handicap people? So all of these things I worry about when I go out and my friends and family have no idea. Living with MD has made me realize how strong I am and knowing I have no choice but to deal with this. I sometimes get stares because people wonder what a young girl like me is doing either walking with a limp, with a cane, or parking in a handicap parking spot. But I don’t mind because they just don’t know me or know what I have. Although my MD has progressed over the years and getting worse, I have learned to except it and make certain changes in to my life such as now walking with a cane in order to keep my balance and helping me not to fall. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know by reading this quote.
"There’s no “cure” or a pill will “fix it”, but at one point I thought it may help. And I thought the same with therapy and food. But it’s my endless support from family and friend that helps. It is hardest thing that I have ever done, and I found myself much stronger for doing it. Never, ever underestimate the power of your desire. If you want to live badly enough, you can live. The greater question, at least for me was: How do I decide I want to live? That is the question I’m still working on?"
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