How to improve self-advocacy in ITP treatment discussions
Note: Shalana Jordan lives with ITP and is a columnist for Bleeding Disorders News.
Living with a rare and chronic illness can be daunting, overwhelming, and all-consuming. Worst of all, it can also feel isolating and lonely. It took me a long time to understand that I don’t have to do this journey alone. Support from family and friends is of the utmost importance, but your medical team can and should be just as much an asset in your medical journey.
In 2018, I became sick with immune thrombocytopenia (ITP). My immune system was attacking and destroying my blood platelets faster than my body could rebuild them. Past traumatic medical experiences made me very wary of seeking medical care or even routine appointments. Discovering I had a disease that I knew nothing about was upsetting because I knew I would need guidance, yet I wasn’t sure I could trust it.
I knew this new condition would force me to have many more conversations with my new hematologist and other doctors. Though I was unaware at the time, I would need to learn to converse openly with these doctors to be an active participant in my future care.
Why self-advocacy matters when managing ITP
Navigating new lifestyle changes and medical care isn’t necessarily a one-size-fits-all type of experience. Your own needs and health goals may differ from another patient’s, and that’s OK. However, your hematologist cannot know what you want unless you speak up.
Ask yourself:
- What’s important to you to understand about your diagnosis?
- What are your fears or concerns about your diagnosis?
- What kind of levels should you be striving for in bloodwork?
- How are you feeling each day, and would something help you feel better?
Because answers to these questions vary from person to person, you must regularly share your specific needs with your doctor.
Write down questions before appointments
Medical providers often overbook appointments in anticipation of cancellations, but if cancellations aren’t happening that day, consultations feel brief, rushed, and overwhelming.
To keep myself focused at appointments, I like to write down any questions I may have and bring them with me. Throughout the month, I’ll think of questions as I go about my daily life and face my challenges. I have a file in my phone so it’s easier to keep a running log of questions and concerns, which has been a lifesaver.
Voice your lifestyle needs and treatment preferences
How does ITP affect your daily life? New medical conditions can understandably affect your quality of life. Merely being kept alive isn’t the same as living life. So it’s important to become an active advocate for your own health and to communicate how you want to manage your condition.
For some people, talking with a doctor about concerns and needs can feel intimidating, but it doesn’t have to be. There’s nothing wrong with open and honest conversations about what you want from your care team, as you are the one living with the outcome.
Discussing ITP treatment options is also very important. Personally, there are a few potential courses of action to treat ITP flares. I also live with another rare disease called atypical hemolytic uremic syndrome (aHUS) and around two dozen comorbidities linked to both illnesses. Sometimes standard ITP treatments can cause other health issues when combined with my aHUS protocols. This is something that always has to be communicated and considered when treating my ITP.
Track your platelet trends and bleeding symptoms
Due to my aHUS, I need to have lab work done every 14 days; therefore, I always have access to current lab results. If you aren’t having bloodwork done as often and are feeling unwell or suspect a potential flare, getting tested quickly is key. One feature of ITP is that a flare can be easily recognized by low platelet counts.
Other symptoms include abnormal nosebleeds, bleeding at the gum line, and frequent unexplained bruising. Tracking symptoms is a great way to stay on top of illness management and to see which activities or daily events cause issues for your body.
A variety of symptom tracking apps and even wearable devices can track and store symptoms you experience, which can then be shared with your medical team at future appointments.
Keep a log of previous ITP medications and responses
ITP can be treated with several different medications. Not all options work for everyone, so bring a current list of all of your medications and maintain a clear record of past treatments, including responses and side effects. This kind of information can be kept in a written log or in a tracking app on your phone or computer.
Ask for a second opinion from an ITP specialist
Asking for a second opinion about a new diagnosis for a rare illness can absolutely feel confrontational, but it doesn’t have to be. When being told you have a potentially life-changing illness, it’s important to be sure. If a second opinion is available to you, seeking an expert’s opinion is a wise move. And if you encounter a doctor who seems upset by this, they might not be the right provider for your healthcare journey.
To get the most out of your medical visits, try using this quick checklist to prepare before you walk into the clinic:
- Track and document symptoms
- Make a list of questions and concerns you want to discuss
- Make a list of challenges you’ve faced with ITP and how you want to address them (or ask for suggestions)
- Bring a current list of all of your medications
Speaking with your doctor doesn’t have to be daunting or scary. I’ve personally noticed many doctors appreciate patients being open and honest about their concerns, treatment, and care plan options. Becoming an active advocate in your healthcare is both essential and empowering. No one knows your body better than you do. And no one else can define what you want for your daily care and results.
Bleeding Disorders News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
