10 Important Lessons Learned in 10 Years with ITP
- By Kristin Hunt
On June 25th, 10 years ago, I was given a diagnosis that would soon change my life in ways I could have never imagined. At just 12 years old, I was baffled to learn what a platelet was and had to wrap my head around what it meant to not have enough of them. Living with Immune Thrombocytopenia as a kid, a teenager and now a 22 year old adult, has taught me so much about myself and the rollercoaster ride that is life. On this 10 year anniversary, I thought I would share with my fellow ITPers, as well as my family and friends, the top 10 things I have learned on my journey with ITP…
1. Always put your health first
They say you don’t know what you got till it’s gone. Well ‘they’ were exactly right. Most people do not give a second thought to the idea that their perfect health could easily be taken away from them in an instant. I used to be one of those people. Not a day goes by that I am not grateful for my overall health, despite having lower platelets than normal. From a young age I learned that without good health, I have nothing. If your wellbeing is not your number one priority, at some point it will prevent you from accomplishing your goals and not allow you to fully be there for the ones you love. When you put your health first, everything else naturally follows.
2. Know your body and do your research
Over the years I have learned that the only person that can distinguish between what is normal and not normal concerning my body, is me. It is important to take note of your symptoms, and pay attention to any warning signs your body may be telling you. Your doctor can see physical signs, but if you cannot describe or recognize how you feel, this will hinder their ability to help you. It is your responsibility to know your body inside and out. Not only this, but it is important to do some of your own research about your disease, understand how your body works and what treatment options are available. Go to your doctor’s appointments with questions ready. Never rely purely on someone else to tell you what to do. Only you know what is best for you and in order to make that decision, you must exhaust all of your resources.
3. Focus on what you can do, not what you can’t do
When I was first diagnosed, it seemed like there was this long list of activities I could no longer do with low platelets. As a kid, being told you cannot go to amusement parks, waterslides or even participate in most gym class contact sports, at first seemed like the end of the world. As I got older, I began to explore all of the things I CAN DO even with lower platelets. The one sport I latched onto was cross country running. I started running from a young age, and although I loved playing other sports, I came to love running more. Over 10 years later, running is still a huge part of my life. Not only does it keep me healthier and in shape, but it is something that nothing can stop me from doing. So although your diagnosis may feel like an obstacle preventing you from doing certain things, it really does not have to be. There are always ways to overcome limitations. With an open and creative mind, you may find yourself involved in activities you might have never even thought to try.
4. Let go of what you cannot control and turn your efforts onto what you can control
Every patient goes through the same draining list of questions when first diagnosed: “How did I get this? Why did I get this? Was it something I did? Why me?” I used to let some of these questions consume me, until one day I realized that the answer to these questions were no longer relevant, and not in my control. Instead, I started asking questions like: how can I optimize my health even with lower platelets? How can I help other patients or spread awareness so that more people know about ITP? These are the types of things that are in my power to change and worth pondering about. Re-focusing my efforts onto these realistic goals allowed me to actually feel like I was accomplishing something productive and that is a much more rewarding sentiment.
5. Don’t let ITP define you, let it inspire you!
Having to live your life around a single number (your platelet count) can often feel like this disease has come to define who you are. This is not true. What is true however is that having ITP will make you a stronger person and will help you deal with life’s challenges with a greater sense of confidence in yourself. I use my ITP every day as my purest form of motivation to be the best person I can be and to live my life to the fullest. ITP has inspired me to help others first by organizing fundraising events, and spreading awareness, and eventually into studying immunology and pursuing a career in the medical field. These things have turned into my greatest passions. There are so many ways that you can use your diagnosis and personal experiences as your own source of inspiration to do something significant, no matter how big or small.
6. Sometimes no medicine is the best medicine
This lesson unfortunately may not apply to everyone. When I was first diagnosed I was getting IVIG treatments every three weeks and blood tests every week, forcing me to miss a lot of school. Although my platelets would go up for a while, they soon fell again. After a few years of this rollercoaster ride, I decided I had enough. I was lucky to not be very symptomatic even when my platelets were quite low, so after about 4 years I made the decision to stop treating. Taking a watch and wait approach, for me, was the best decision I ever made. The side effects of most treatments for ITP tend to be worse than the disease itself. With few symptoms, it seemed logical to me that living a safe, healthy, risk-free life-style would be a small sacrifice to avoid so many hospital stays. Over the years my platelets have managed to stabilize in a safe enough range (25-45,000) allowing me to live my busy life as a university student with minimal treatments or blood tests. So when people ask me how I’m so motivated to eat well, regularly exercise, and stay away from anything that could compromise my health, my answer is very simple. Sadly, not every patient has the option to safely stop treating which is why research into new ITP treatments is still critical.
7. Be your own advocate
This lesson has two meanings. As an individual patient, you are the number one person who is going to look out for you, so make sure you become your own best supporter. Do your research, become an expert of your own health and make sure to form a good relationship with your hematologist so they can help you make the best choices. As part of a much larger community of ITP patients, we also have the responsibility to be our own advocates as a group. Instead of sitting around wondering why nobody knows about ITP, and why few resources exist, why not strive to change that? Spread awareness, distribute important information, or get involved with an organization like PDSA. There are so many ways to support your own cause and join forces with a community of people that are looking to accomplish the same goals as you!
8. Surround yourself with people who love and support you
This is probably one of the most important points, especially when first going through your diagnosis. The best way to ease the struggle is to have family and friends by your side that you can rely on for support. Unfortunately, throughout this process you may also come to realize who your real friends and supporters are. But that is okay, because you do not have time for anyone in your life that does not put a smile on your face and make you feel loved no matter what. However, it is also important to give your loved ones some slack, because the reality is that they will never experience exactly what you are going through. However, if you help them understand and they are there for you when you need them, then that should be enough. Seeking support in others who have ITP had a huge impact on my ability to not feel alone in my battle. Attending PDSA’s annual conferences has been where I have made some incredible friends who fully understand some of the personal experiences I have gone through.
9. Don’t be afraid to be different, embrace your uniqueness
When you have a disease, there is always that lingering fear that if you tell people about it, they may treat or think of you differently. I definitely experienced this throughout my high school years. I went through my phase of denial and trying to avoid talking about my ITP, but if anything this made me feel more isolated. Once I finally accepted it as just another part of my life, and embraced it as something that made me more unique, I started to willingly tell my story. I realized that the more I talked about it, the easier it became to deal with because I did not feel like I had to hide it anymore. I’ve stopped worrying about what others may or may not think. The positive and negative experiences I’ve had because of ITP have shaped me into the person I am today, and I am proud to tell the story of that person. At the same time, I am able to spread more awareness of ITP which will only have greater benefits in the fight against this platelet disorder.
10. Stay positive, have hope and just enjoy your life!
Lastly, the greatest lesson of all is that attitude is everything. The day I finally decided to turn my negative attitude about my health into a more positive outlook, was the day I started living my life again. It is so easy to just feel sorry for yourself and become consumed in negative thoughts. However, I can assure you that if you can find the strength to climb out of that dark hole, you will never want to go back. I truly believe that we all have the power to choose to be happy. Be thankful for all of the good things in your life and keep those at the forefront. Also remember that no matter how bad things might seem to be at the moment, know that it cannot last forever. So always have hope that your life and health can change for the better. As the saying goes in the ITP community, you may have ITP, but ITP does not have you! So remember to take the time to put your worries aside, if only for a moment, and simply enjoy your life!
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