Skip to main content

Why I Am Thankful for Being 'Rare' This Rare Disease Day

I bet you never thought you would hear me say I am grateful for my rare diseases. Heck, I never thought I would ever say that. Being diagnosed with several rare diseases with no cure is life-altering and a hard concept to grasp at first. Of course, many days are filled with worry, frustration and pain. But today, I am thankful for all of the life lessons my rare diseases have taught me.
1) My rare diseases have taught me patience. Before I became sick, it seemed as if I was always in a rush. Now I realize it is important to slow down and realize life is about a journey. Enjoy this moment.
2) My rare diseases have taught me the importance of friendship. When you become sick, you truly find out who your friends are. My true friends have been there for me through every painful test, hospital admission, and surgery I have endured.
3) My rare diseases have taught me gratitude. I am thankful my rare diseases have made me realize every single breath we take on this Earth is a blessing, a gift — not a right. Don’t ever take that for granted.
4) My rare diseases have taught me about endurance. I will never stop fighting. I will never give up on my body. My body has made it through every hardship thus far. My body is undefeated against my chronic illnesses.
5) My rare diseases have taught me about optimism. One thing I always remind myself is, “It could always be worse.” And I truly mean that. I will always know in my heart that things will get better, even on the worst, most painful days.
6) My rare diseases have taught me empathy. My heart breaks for every person struggling with an illness. When I read articles and posts by other “spoonies,” I can feel in my body how awful their pain is because I have been through it. I have hope better days are coming for each one of you!
7) My rare disease have taught me the meaning of strength. This is a deep strength within myself that I never knew I had. I may not have as much physical strength as I once had before I was sick, but mentally and emotionally, I am strong and my illnesses will not break me.
8) My rare diseases have taught me unconditional love. I never thought at 24 years old I would need help with basic tasks such as walking or showering. But, sometimes I do, because that is the reality of being chronically ill. My fiance has seen me at my absolute worst — crying in pain, puking — you name it, and he has dealt with it. Never once has he ever complained about helping me. Never once has he or my parents made me feel like a burden. And that, my friends, is the definition of unconditional love.
9) My rare diseases have taught me about faith. I never have been the most religious girl, but getting sick has showed me how important faith is. Not just religion, but faith that things will get better. Faith that everything will be OK in the end.
10) My rare diseases have taught me to appreciate simplicity. I now find joy with the smallest things in life — my own bed, instead of a hospital bed, cuddling with my dog, having the energy to get up and cook a meal, and taking a shower without passing out.
So thank you, rare disease, for teaching me how to love this life.
Happy Rare Disease Day, fellow  porphyria warriors!


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…