Expressing Gratitude: Being ‘Rare’ Has Positive Attributes, Too
Being diagnosed with a rare disease is heart-wrenching and difficult, and something one usually never expects. It changes the course of a person’s life, leading them down a path filled with stumbling blocks, tree roots, cliff edges, and deep valleys. But the path is also strewn with unexpected flowers, rainbows, and opportunities.
I will always be grateful for some of the moments and life changes I’ve experienced. Following is my gratitude list:
I have learned the importance of being kind to others, supporting them, and simply taking the time to notice them. We shouldn’t judge others, because we likely don’t know their circumstances or their battles. We should strive to choose kindness in every situation.
I have made friends with the most inspiring human beings. These include fellow patients, caregivers, families, supporters, volunteers, and members of the public who want to be the change that we all envision. I have met journalists and celebrities who see the importance of creating awareness and want to work with us to make a difference.
We rare warriors often are unable to hold down a “normal” job. This causes extreme stress, pressure, and uncertainty about our future. Having to work with others who may have no idea what it means to fight every day can be draining, but it also pushes us to try harder to make a difference and educate the public about the reality of being rare.
If I weren’t rare, I wouldn’t have discovered my true passion, and I probably would be stuck in the corporate world. Instead, I get to make a difference to other patients through my work at the nonprofit organization Rare Diseases South Africa. I understand their situation better than many others do.
I never thought I would feel gratitude for my situation or for what my body has been through. Being constantly told that doctors don’t know what to do or how much time is left is a reality for many rare warriors. Yet my body has pulled through, every time.
Pneumocystis pneumonia, ventilation, stem cell transplant, infections, chemotherapy, plasmapheresis, choking, septicemia, infertility, operations, endometriosis, ovarian cysts, a cancer scare — the list goes on. And so does my body. And I am so grateful for this.
Rare warriors need to have strength like no other. We need to encourage ourselves when we feel we can’t go on. We need to realize we are here for a reason, and we can’t give up no matter what is thrown at us. We cry, we scream, we fight, and we learn that we are strong. This is a type of strength that we wouldn’t understand without our battles.
Sometimes it is difficult to focus on the small victories due to the battles and the constant stress. But one day, we can learn to sit down, take a deep breath, and realize that we are special. We are loved. We are making a difference. And we have the opportunity to inspire someone else.
Take that chance and run with it!
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