How to Manage the Biggest Mental Health Impacts of Living With ITP

How to Manage the Mental Health Effects of Immune Thrombocytopenia

If you’re struggling with anxiety, depression, or stress, which are common in people with this condition, these tips can help.
How to Manage the Mental Health Effects of Immune Thrombocytopenia
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Living with immune thrombocytopenia (ITP) can carry a certain amount of stress. Whether you’re newly diagnosed or have been living with ITP for years, managing this blood-clotting disorder means having to carefully assess even ordinary activities for risk of bleeding.

This type of stress has been linked to anxiety and depression. In one study, 80 percent of participants with ITP reported experiencing anxiety.

Moreover, the disease itself can physiologically affect your mental health: ITP is an autoimmune condition that causes the release of cytokines (proteins that play a role in regulating inflammation in the body), which have been shown to have a negative impact on mental health, says James Martin, MD, a hematologist at Cleveland Clinic.

The good news is, there are ways to tackle these challenges and improve your mental health. Keep reading to learn how.

The Challenges of Living With ITP

Because anxiety and depression appear to be inextricably linked to ITP, managing some of the challenges of living with the condition may be one way to help reduce its impact on your mental health.

Here are some of the main issues that can crop up when living with ITP — and what you can do to minimize them.

Keeping Platelet Numbers Up Anxiety around maintaining a stable platelet count (a measure of your blood levels of platelets — particles in your blood that help blood clot) affected more than a third of participants in a multinational survey. The survey showed that platelet control was very important, and poor control had a negative effect on the participants’ emotional well-being.

Talk to your doctor about treatment options, such as corticosteroids, immune globulin, and drugs that increase platelets, to find out what might be right for you.

Reacting to Medication In some cases, the medication you take for treatment can affect your mental health, says Alexandra Wolanskyj-Spinner, MD, a hematologist at Mayo Clinic in Rochester, Minnesota. Corticosteroids, the first line of treatment, are linked to depression, insomnia, and mood swings. If you notice a change in your mental health after starting a medication, ask your doctor about changing treatments.

Facing the Reality of a Chronic Condition Persistent or chronic ITP is a lifelong condition, which means you may always need medications and other treatments to manage your symptoms. And you’ll always need to stay vigilant about avoiding injury to reduce your risk of uncontrolled bleeding. “Having any chronic disorder is difficult and impacts daily living,” says Dr. Wolanskyj-Spinner.

“Having a chronic condition in itself is a brain shift for people. Maybe they were completely healthy before, and now they have to change the way they think about things,” Martin says. “The quality-of-life scores for people with ITP are similar to those of people with cancer.”

If you’re experiencing anxiety, depression, or stress, talk to your hematologist about getting a referral to a mental health professional — preferably one who has experience working with people who have a chronic condition.

Limiting Your Activities If you were active and enjoyed certain activities, such as high-contact sports, before you were diagnosed with ITP, you may have been advised to limit or stop engaging in them, because they’re considered risky for people with ITP. Having to avoid or modify your normal activities may lead you to experience depression and other negative emotions.

But it’s important to remember that physical activity can be beneficial for your mental health, which is especially crucial for people living with ITP. Ask your doctor to recommend activities that may be safe for you to engage in, so you can continue to stay active.

Modifying Your Life Goals If you’re thinking about starting a family, you may need to take extra measures to stay healthy and safe. ITP affects more women than men. That includes women of childbearing age, so this is an issue for many women with ITP.

Talk to your hematologist and obstetrician-gynecologist about precautions you may need to take.

While these challenges can be significant, preparing yourself for the emotional burden of ITP can help you reframe those challenges so you can live your life to the fullest.

How to Protect and Improve Your Mental Health

Your physical symptoms will most likely improve with steroid treatment, which will increase your platelet count. But it’s important to remember to take care of your mental health also. You can take steps to ensure you’re treating your whole body by following these suggestions:

  • Remember that you are not alone. About 40 percent of the participants in a study of people with ITP experienced depression after diagnosis. The study also indicated that depression treatment could be an unmet need for people with ITP — and depression could be connected to overall quality of life.

  • Find support. Immune thrombocytopenia is classified as a rare blood disorder, so it’s easy to feel like no one in your social circle understands what you are going through. But there are support groups for people with ITP, such as the Platelet Disorder Support Association (PDSA), that can help you feel less alone. “There is incredible value in talking to people who are going through the same thing,” says Dr. Martin.
  • Eat well and be active. While there is no specific diet for ITP, following the American Heart Association diet is a good place to start, says Wolanskyj-Spinner. And exercise — even as little as 75 minutes of vigorous exercise or 150 minutes of moderate activity a week — can improve your overall health, as long as you stay safe and avoid contact sports.

  • Get sleep. In a survey by the PDSA, 90 percent of respondents with ITP who were taking corticosteroids reported having sleeping problems. Ask your doctor if you can limit steroid use. And develop healthy bedtime habits, such as a consistent sleep routine. A good night’s rest on a daily basis can help improve your mood.

  • Talk to your doctor. Your doctor may not ask you about your mental health. A good way to discuss it is by downloading and filling out a quality-of-life questionnaire and bringing it to your next appointment. Wolanskyj-Spinner recommends seeking out a practitioner you can trust. “The journey can be unpredictable, and you need to feel like you are in a strong, therapeutic relationship with your physician,” she says. You do not want the stress of not being able to reach them or feeling like they don’t listen to you.

The Takeaway

  • Living with immune thrombocytopenia can have a significant impact on your mental health and increase your risk for anxiety and depression.
  • Mental health symptoms may be caused by the challenges of living with ITP, as well as by the condition itself.
  • If you’re experiencing anxiety, depression, or stress, talk to your doctor. They may be able to find and treat the cause of your issues and refer you to a mental health professional.
Anna-Hurst-bio

Anna C.E. Hurst, MD, MS, FACMG

Medical Reviewer
Anna C. E. Hurst, MD, is a medical geneticist with board certification in clinical genetics and pediatrics. She is an associate professor in the department of genetics at University of Alabama at Birmingham (UAB) and an adjunct faculty member at the HudsonAlpha Institute for Biotechnology. Prior to medical school, she received a master’s degree in genetic counseling, which inspired her interest in the communication of genetic information to patients and families with rare diseases.

Dr. Hurst is a physician for the UAB Undiagnosed Disease program, Turner syndrome clinic, and general genetics clinic, and she provides hospital consultations for inpatients at UAB and Children’s of Alabama for general genetics and inborn errors of metabolism. She also is the medical geneticist for the Smith Family Clinic for Genomic Medicine in Huntsville, Alabama.

Hurst's research focuses on expanding the availability of genomic sequencing for children with complex healthcare needs. She also has an interest in how the patient’s physical exam and facial features can be clues to a rare disease diagnosis (dysmorphology) and serves on the scientific advisory board of Facial Dysmorphology Novel Analysis. She has published over 45 peer-reviewed articles in the field of medical genetics, largely focused on the clinical delineation of rare disease phenotypes. She also serves as an associate editor for the American Journal of Medical Genetics.

Hurst is also passionate about education and serves as the program director of the UAB genetics residency programs (categorical, pediatrics-genetics, and internal medicine-genetics) and medical director of the UAB Genetic Counseling Training program. She is an officer with the Association of Professors in Human Medical Genetics.
nina-wasserman-bio

Nina Wasserman

Author

Nina Wasserman is a journalist with more than a decade of experience interviewing people and writing on a variety of topics, including health, medicine, business, and faith, as well as human interest stories. Wasserman also home-schools her two children in New Jersey and teaches writing to middle school students. Her passion is foraging for mushrooms and edible plants in the woods, a practice that contributes to her health and wellness.

EDITORIAL SOURCES
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Resources
  1. Cooper N et al. Qualitative Study to Support the Content Validity of the Immune Thrombocytopenia (ITP) Life Quality Index (ILQI). British Journal of Haematology. August 2021.
  2. Cooper N et al. Immune Thrombocytopenia (ITP) World Impact Survey (iWISh): Patient and Physician Perceptions of Diagnosis, Signs and Symptoms, and Treatment. American Journal of Hematology. February 2021.
  3. Immune Thrombocytopenia. Mayo Clinic. June 8, 2023.
  4. Coping With ITP: Frequently Asked Questions [PDF]. Platelet Disorder Support Association. 2023.
  5. Frequently Asked Questions. Platelet Disorder Support Association. 2023.
  6. ITP in Adults. Platelet Disorder Support Association.
  7. Alesci RS et al. Identification of an Unmet Medical Need: Height of Depression, Hypersomnia, and Sleep Apnea Positively Correlate With the Level of Fatigue in Patients With Immune Thrombocytopenia. Cureus. October 13, 2023.
  8. Healthy Eating. American Heart Association.
  9. American Heart Association Recommendations for Physical Activity in Adults and Kids. American Heart Association. January 19, 2024.
  10. Diraimo J et al. Sleep Health in Adults With Immune Thrombocytopenia: Quality of Life Data From the Platelet Disorder Support Association Patient Registry [PDF]. Platelet Disorder Support Association. 2021.
  11. The World Health Organization Quality of Life (WHOQOL). World Health Organization. March 1, 2012.