Article previously published in the Cutaneous Lymphoma Foundation's Forum Summer 2013 newsletter.
Throughout my life, I have witnessed so many people being afraid of their greatness. In fact, they fear greatness more than they fear being ordinary!
I love this quote by Bill Cosby, “Decide that you want it more than you are afraid of it!”
Whether what we want is a new relationship, a successful career, better health or just a better life, we still have to make a decision to do so. Too many people let fear run their lives instead of pursuing the powerful life that they desire. My favorite conversation to have with folks is how to improve their quality of life. Let’s face it; if you have a chronic or rare disease, it’s an even greater challenge to “live your best life.” That’s why we need to do all we can as patients to empower ourselves and ensure that we have the best care possible.
Living with Psoriasis/Psoriatic arthritis for over 42 years, both chronic and debilitating diseases, has taught me a lot about how to live a life of joy. It has taught me how to persevere and overcome challenges, how to be my own advocate and has helped me to develop a strong “empathy” muscle for dealing with people. More importantly, it has taught me that my disease does not define me. I have a disease, but it doesn’t have me! My goal has always been to live a life that I love and live it passionately. Chronic daily pain has forced me to become mentally, emotionally and empathically strong. I now teach others how to advocate for themselves and how to live passionately in spite of the challenges that they face. We are always our own best advocate.
So how do you live your best life with a rare and chronic disease? As Bill Cosby says, you have to “decide” that you want it (your best life) more than you are afraid of it.
Awareness of your condition is vital. Finding the right “team” to assist and support you is the foundation that you need to navigate the rough waters you face. Studies show that when you have a disease that “shows,” the emotional and psychological aspect is much greater than having a disease that other people cannot see. This is why we need kind, caring people on our team and in our lives. Lastly, we have to persevere, which I believe is the key to living an empowered life. All of us have days that we are sad, depressed, frustrated, lonely and negative. However, becoming mentally strong is your greatest source of power and strength.
Awareness of the disease is very empowering. We learn that we are not alone: that there is hope, that there are caring people helping to find a cure, treatments and options. Being diagnosed with a rare disease is overwhelming. You don’t know where to begin to process it emotionally, or how to navigate an entirely new reality. I encourage people to seek knowledge and education. Be open to alternative therapies. Talk to others to have suffered with the same or similar conditions. Be BOLD! Ask for help and know that it is a sign of strength. Ask them about their journey, the wisdom they have accumulated along the way, and what has or has not worked for them. There are so many resources available to us, especially with the internet, it makes research so easy. Make sure that you deal with reputable sites and positive people. But most of all know that you are not alone.
To live successfully with chronic disease you need the right team. Look for opportunities to interact with practitioners, patients, and patient advocates. Each relationship is another piece of the puzzle. Finding a kind, empathetic physician/nurse team that cares about positive patient outcomes is a critical piece of your treatment process. Remember, you are in “partnership” with your physician and nurse. The three of you are responsible for getting you the tools and information you need to properly manage your disease.
The definition of perseverance is to persist in anything undertaken maintaining a purpose in spite of difficulty, obstacles, or discouragement; continue steadfastly. A positive mindset is essential; focus on the “opportunity” verses the obstacles. We have to navigate appropriately. If a ship or plane is off-course even 2 degrees, they can eventually end up on the other side of the world. We need constant course correction to keep ourselves focused. We have to teach ourselves how to accept what we cannot change. Anxiety and fear will come, but we don’t have to let fear win.
Believing in ourselves and having the confidence to carry on in life, regardless of our challenges makes us stronger. Once you get the right team in place you have to keep at it! This is a constant struggle for all of us. It is easy to get depressed, fearful, negative, and to sometimes feel victimized by our disease. But we need to get inspired and get back on track. Being your own advocate gives you personal power!
I decided a long time ago that my disease would not steal my joy! It is difficult to persevere alone which is why the right team is so important. My team is BIG! I have family, friends and a group of healthcare providers dedicated to helping me thrive. Refuse to be a victim and keep moving forward. Sometimes people get stuck with the question, “why” did this happen to me verses asking “how”. How can I use my disease to help myself and others? “How” is so much more empowering than “why”!
Inspire yourself with a positive attitude! Fill your life with positive people and look for opportunities to help and inspire others. It takes your focus off of your condition and allows you to contribute what you’ve learned on your journey to countless others who may be suffering.
Give yourself away unashamedly! Make your life a “silver box”…a gift to others. This will truly give you your best life!
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