I was diagnosed with ITP at 11 and immediately my doctor warned us of the connection between lupus and ITP.
- What is your name?
Talon C. - Where are you from?
Littleton, Colorado - Please share your story of being diagnosed with both Lupus and ITP. How did it all begin for you?
I was diagnosed with ITP at 11 and immediately my doctor warned us of the connection between lupus and ITP so we made sure to always keep very close watch for any symptoms or lab work that showed signs of lupus progression. In 2018, I started getting the common butterfly rash on my face and hands that were extremely red, bumpy and at times itchy or painful. Shortly after, it seemed like the symptoms slowly started stacking up one by one that all perfectly aligned with Lupus and I got the official diagnosis in March 2018 when I ended up in the hospital with a lupus flare up and a major drop in my platelets that had been in remission for multiple years leading up to the hospital stay. I was put on steroids, started another round of IVIG and continued to move forward with taking proper care of both conditions with multiple doctors that I still have to manage today. - What do you wish others knew about living with both Lupus and ITP, especially those who may not fully understand these conditions?
Chronic fatigue is one of the most paralyzing symptoms that often goes unnoticed and should be taken way more seriously in my opinion. There are so many struggles that come with the chronic fatigue of both ITP and lupus including brain fog, cognitive difficulties, sensitivity to light and noises, and feeling absolutely drained physically and mentally from doing the bare minimum EVERY SIGLE DAY. Trying to function in a body that is so physically and mentally exhausted is extremely difficult and at times seems impossible to work through. To others, it may seem like we are lazy, inattentive or boring, but sometimes, we are just trying to push through the day giving all the energy we have, and that is a really big task when you don’t have much energy to begin with.
I wish more people could understand and appreciate how much effort it takes just to do the simplest of tasks such as taking a shower, getting dressed or finishing chores around the house. What could be easily completed in a short amount of time to a person without itp and lupus, can take hours or even days to accomplish when the fatigue is at its peak. I wish more people would discuss that this is out of our control and not something that a cup of coffee or a dunk in an ice bath can fix although it might work for others. - >What have been some of the hardest obstacles you've faced while living with Lupus and ITP? How have you overcome them?
My biggest struggles have definitely been from the chronic fatigue that plagues me everyday and constantly feels like I am living on an empty tank of gas 24/7. I have not "overcome" this obstacle per se, but I have definitely gotten much better about adjusting to it. Giving myself permission, I truly think was what really shifted my mindset in a positive way. I always felt like I had to try to keep up with everyone all the time or constantly be on the go because I didn’t want to disappoint anyone or seem like I was lazy, boring or holding people back from making plans etc. When I finally learned to say no to things that I truly didn’t have energy for and made boundaries for what I choose to spend my energy on, I think a big weight came off my shoulders.
I started giving myself time to rest when I need it and being unapologetic about listening to my body when it’s telling me that I am doing too much. When I give my body the rest it needs in the moment instead of pushing myself and overdoing it, I don’t end up paying the consequences later with my physical and mental wellbeing taking a major decline. My health is significantly better when I am not overly stressed and tired, so now that I am older and conscious about the time I spend thanks to the boundaries I have set, I am able to accomplish more without flaring up all of my symptoms and that makes a world of difference for my life! - Is there a moment or experience in your journey that stands out as a source of strength or inspiration?
In 2018, I was asked to be on the cover of the fall edition of The Platelet News! I had never even had a professional picture taken before so the whole experience of doing a photoshoot and in person interview was really exciting to me! That was when I became inspired to begin my journey in being a voice for chronic illness, sharing my story in the hopes of connecting and inspiring with people all around the world! This really helped to define who I am and played a major role in owning my chronic illnesses by separating them from WHO I AM, to being CONDITIONS I HAVE - which did not define me!
I was able to let go of being "the sick girl" in my head and being proud of who I am despite all of the extra challenges I faced! I truly believe that I was meant to be diagnosed with everything that I have been because I wouldn’t have the appreciation and love for every second of my life and the struggles that helped shape me into who I am! My life’s purpose is to connect and help others in any way that I can and after that magazine went out, I think it altered how I saw the world around me because I had a completely new perspective INSIDE ME. That magazine helped mold me into the confident woman I am today and positively impact people all over that have connected to my story! - What role has PDSA played in your healthy journey?
PDSA gave me a community that immediately embraced my family and I. When you are first diagnosed with anything, it’s scary feeling like you don’t know what is happening inside your body and feeling very secluded because you don’t have anyone who understands how much you are really carrying. To be greeted by so many other people who knew EXACTLY what I was going through physically and mentally took so much of the fear away that I was struggling with. I also love that my family had others they could relate to as well. I think it’s easy to forget that the ones closest to us are simultaneously struggling, but in a completely different way. Being a caretaker is an extremely hard job that nobody ever wants to take the position of.
Watching someone you love battle their health but not being able to actually DO SOMETHING to take away the pain and suffering is heartbreaking. That, and the burden of also feeling alone because others don’t understand what it’s like to be in a position of vulnerability 24/7, weighs heavily on a person’s mental state. It’s very difficult to be someone with a chronic illness alongside a caretaker and vice versa all the time, so you PHYSICALLY are together, yet, you both still feel isolated in your mind because you can’t relate what you are going through to people who aren’t in the same position. PDSA gave my parents and siblings immense relief, reassuring them that they had a strong support system to connect with regardless of the circumstances. We have all built relationships with a vast multitude of people through PDSA over the last 14 years since my diagnosis of ITP.
They have become a safe haven and a second family to all of us in our own ways and meeting new people who are in the same position my family and I were in at the beginning of my journey is a privilege. To be the calm in someone’s storm is a normally a big responsibility, but with PDSA, being a support system to one another feels just like family. I am fully aware of how lucky I am to have a group of people that are so loving, understanding and accepting of me! I think that if I didn’t get introduced to PDSA from my hematologist, my battle with ITP would’ve been extremely intimidating and lonely. I wouldn’t be who I am without The Platelet Disorder Support Association, so, the role it has played in my life has been profoundly impactful providing me with unwavering support, invaluable resources, and a community that truly understands my journey! - Share something unique about you and/or one of your favorite hobbies.
I absolutely love to read! I don’t like anything fiction though and my go-to book of choices are self-help books, biographies, and any other novel that I can learn and grow from! If I’m not reading, I’m either listening to wide range of music or a podcast in the same self-development genre providing other ways to grow physically, mentally and emotionally! Learning from others is what keeps me motivated and inspired to try new things and better myself in new ways I wouldn’t discover on my own, which I love! - >What can you be found doing on the weekends?
My weekends are all about spending time with my family and friends! I have a tight circle and no matter where we are or what we’re doing, I am always laughing and having fun soaking up every minute we get to be together, making memories like game nights, cooking competitions, tea parties, and playing make believe with all of the littles in my life including my favorite niece and nephew! - What is one thing you’d share with a newly diagnosed patient? This can be a tip, important reminder, inspirational quote, or something else you feel compelled to share.
Gratitude and perspective — always. No matter where you are or what you're going through, you can instantly shift negative energy by focusing on the positives in your life. Remember, someone, somewhere, no matter how bad things seem, would dream of being in your position. Yes, things could be better, but they could also be far worse. Keeping this perspective in mind can truly transform your world for the better, especially during challenging moments with your health!
Interested in sharing your journey with ITP? Submit your ITP story here. (Full names and contact information will not be shared).