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8 Tips for People Facing a New Diagnosis

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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. I went to the orthopedic doctor, who recommended I see a neurologist and a series of tests 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). At first, I wasn’t telling anyone. The 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 recognized that my employer needed to know because there were tasks I wasn’t physically able to do.

It was hard to tell people what I had because I didn’t initially accept it. Six 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). I did a lot of shopping to feel good and get it off my mind. I was still able to go to the gym. I wasn’t involved in any organizations and was still thinking, this is not what I have. I was still dealing with a lot of emotions. When I approached the one-year mark of being diagnosed and was 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. I found out about the Muscular Dystrophy Association (MDA), started connecting with people my age and found more opportunities for support. A friend recommended I start using hashtags related to my condition when posting on social media, and I found myself 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, and continue to speak, raise funds and spread awareness. I 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 shoulders 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 without 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 PCAs, 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. 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 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:

1. 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.

2. Use the first few weeks to educate yourself. Learn about the symptoms, the best practices, the resources and support groups available for your condition.

3. Reach out to others with the same condition. 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 intense emotions that can come with a diagnosis.

4. Support groups help.Support groups can give you the ongoing relationships, information and wisdom needed to get through living with a chronic illness or whatever condition you may have.

5. Writing is healing. It wasn’t until a friend recommended 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.

6. It will take time to accept your diagnosis. Give yourself time. There isn’t a timeline on how long it may take to fully accept what is happening to your body. You may need a few days, weeks, months 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 OK. Everything is fine.

7. 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.

8. 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, depression (or what seems like a gray cloud) can hang over us for 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.

There’s beauty in acceptance. There’s a freedom we gain when we open up to others and no longer have to carry the heaviness of a disability 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’re living with a chronic illness every day. Every day I wake up, see what my body decides we are going to do and go from there. I take it one day at a time.

Originally published: October 22, 2018
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