Living with Relapsing-Remitting MS: A Personal Story
A New Perspective on Disability
By Darbi Haynes-Lawrence, PhD, as told to Evan Starkman
Never Giving Up on Dreams
It’s been 13 years since Darbi’s diagnosis with relapsing-remitting MS, and her journey has been filled with challenges and triumphs. At 47 years old, she still sees herself as the college athlete she once was, but her disabilities have made her reevaluate her life goals.
Despite the frustrations, Darbi’s determination shines through as she continues to adapt and strive towards new aspirations with grace and resilience.
Overcoming Self-Doubt and Judgment
Despite dealing with the daily battle of feeling inadequate and being misunderstood by others, Darbi’s strength and resolve prevail. She allows herself moments of vulnerability but always strives to reframe negative thoughts into positive affirmations, empowering herself to keep moving forward.
Challenging Misconceptions
Darbi candidly shares her experiences of being judged for using handicapped parking spots and the impact these encounters have on her self-esteem. Her story highlights the importance of understanding that not all health conditions are immediately visible and the damaging effects of assumptions and misconceptions.
Finding Answers and Empowerment
Darbi’s journey to diagnosis was riddled with dismissive attitudes from healthcare professionals, but through her own perseverance and advocacy, she finally received the answers she sought. Her experience serves as a powerful reminder for individuals to trust their instincts, seek second opinions, and not be afraid to challenge medical professionals.
Creating Hope and Empathy
With an unwavering determination to empower others, Darbi shares how she turned her personal struggles into a resource for others by writing a series of children’s books that aim to educate families about multiple sclerosis. Her commitment to providing support and understanding shines through in her efforts to inspire hope and empathy in others.
Embracing the Road Ahead
Darbi’s journey is a testament to resilience and the power of hope in the face of adversity. Her unwavering spirit and commitment to raising awareness and understanding around MS serve as an inspiration to all, reminding us that despite life’s challenges, we have the strength within us to create meaningful change and empower others.
Insights and Reflections
In delving deeper into Darbi’s story, it becomes evident that the journey of living with relapsing-remitting MS is a multifaceted experience that goes beyond the physical aspects of the condition. Here are some unique insights and perspectives to consider:
The Unseen Struggles
While the physical symptoms of MS can be debilitating, the emotional and mental toll it takes on individuals is equally profound. The constant battle between feeling limited by the condition and striving to maintain a sense of normalcy sheds light on the hidden struggles that often go unnoticed.
The Importance of Advocacy
Darbi’s journey emphasizes the critical role of self-advocacy and seeking out the right healthcare team. Her experience serves as a powerful reminder for individuals to actively participate in their healthcare journey, ask questions, and not settle for dismissive attitudes from medical professionals.
Empowerment Through Creativity
Darbi’s decision to channel her experiences into writing children’s books not only demonstrates her resilience but also highlights the transformative power of creativity in overcoming adversity. Through her creative endeavors, she aims to provide resources and support for families facing similar challenges.
Shifting Perspectives on Disability
By sharing her journey, Darbi challenges misconceptions and offers a new perspective on living with a chronic condition. Her story serves as a reminder to embrace empathy and understanding, recognizing that the impact of MS extends beyond visible symptoms and requires support and compassion.
Summary
Darbi Haynes-Lawrence’s inspiring journey of living with relapsing-remitting MS is a testament to resilience, determination, and the power of advocacy. Her story sheds light on the profound impact of the condition on all aspects of life, from personal aspirations to societal perceptions of disability. Through her experiences, Darbi exemplifies the importance of self-advocacy, creative empowerment, and the transformative potential of sharing one’s story. Her unwavering spirit serves as a beacon of hope, inspiring others to navigate their own challenges with courage and compassion.
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By Darbi Haynes-Lawrence, PhD, as told to Evan Starkman
It's been 13 years since my neurologist diagnosed me with relapsing-remitting MS and I still forget that I have many disabilities. I'm 47 years old, but in my brain I'm still a college athlete who ran marathons on the weekends.
I have always been a great goal-oriented person. I earned my PhD when I was 30 years old and my dream has always been to be a dean of students. I can not now. I have to be realistic and that means modifying my life goals. It can be frustrating.
Sometimes I feel like a fraud, in the sense that I could do so much more if I didn't have MS. It's a daily battle of feeling like I'm not doing enough. Every day when I need to get some rest, part of my brain says, “No. You're so lazy. Look at these other people who can do it without lying down to rest.”
Sometimes I give myself a few minutes to be in a puddle of pity. But not by much. I let the negative thought arise. I rethink it. Then I say it out loud: “Right now I can rest. Disabled or not, I'm tired and I'm not going to be any good to anyone if I don't rest.” Then I give myself that time and we go. It's rare that I take a day off.
I've had several people say to me, “You don't look disabled. Why are you using that handicapped parking spot?” And it's like, “Well, give me a second to get out of my car, get my wheelchair out, and let me show you.”
The doubt that people had still haunts me. It was a real attack on my self-esteem.
Sometimes health conditions are not visibly obvious right away. They are physically “hidden.” But the condition is there anyway.
Years before I was diagnosed with MS, I had completely strange symptoms. First my palate burned. I was absolutely on fire. Then the right side of my face was drooping. And then it progressed from there, until the entire right side of my body became very weak.
When I was in my early 20s, I remember starting to stumble a lot and thinking, “Oh my God, this is what happens to you when you go from being a college athlete to only working out once or twice a week.”
I also had trouble remembering words. It's horrible to go from a very large vocabulary to having to struggle to find the right word sometimes.
After having my daughter at age 30, my strength began to decline quite a bit. Over the next few years, I started choking on food because I couldn't chew or swallow well. I also had trouble seeing with my right eye.
My doctors said, “You are a young professional. You have a small child. You and your husband have a business. You are just stressed.” Women are often told “it's just stress.”
A doctor told me I was crazy. He was my primary care doctor and he damaged the confidence I have in myself. He made me doubt everything I was experiencing. I assumed he would treat me well and be the leader of my healthcare team. But it took a lot of emotional beating for this man to realize that he was a very bad choice for that role. In the end I fired him. I wish I had believed that he wasn't crazy.
It was my dentist who set me on the right path after I told him my lips were swollen and my palate was burning. Those could be signs of a neurological health condition, he told me. And that's what prompted me to see the neurologist who finally diagnosed me with relapsing-remitting MS.
Therefore, I would recommend that you ask and investigate your healthcare team. And don't be afraid to fire your doctor. Never let them put you down just because they have the “Dr.” in front of his name. Keep asking questions. Keep looking for answers. And don't give up.
When I was finally diagnosed with MS at the age of 34, I was relieved to have a name for what I was experiencing. I was also relieved that there was a treatment plan. I could move on. My career was not over. I was going to be able to be there for my daughter, who was 4 years old at the time.
The rest of my family was terrified. Everyone regretted the diagnosis, although I did not. I thought, “How do I explain MS to my daughter? How do I explain it to my family? How do we keep moving forward?” She couldn't find the information she was looking for as a mother.
I finally created the resource that I didn't have back then. I wrote A conversation about multiple sclerosis, the first of three children's books from the MS Foundation. I hope it empowers families.
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