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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629853b1f0e-9d16-4d19-8f17-b16c341cedd8 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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629b365b8ca-b79d-4aff-bcbb-f7d113800c6c 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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629b8c2f42e-040e-40f9-b894-4c8a76ce1d61 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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629b8584e3d-7da5-493e-bf87-5f3a950cd427 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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629a91eab46-dab5-42af-9576-fea1eb286c1b 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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629a0f26591-9dd6-45cb-9e10-4f355f0f9ff7 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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fd9a0725-f0df-41be-b2d9-39546b5cc040 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.e60dc2a1-f33c-4a05-9b50-8e3e8e5976292a2c22a5-3078-42ee-ad3d-56e49fc36450e60dc2a1-f33c-4a05-9b50-8e3e8e59762979ff5764-1f3b-4d0d-9ee0-d5da9075b397 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.e60dc2a1-f33c-4a05-9b50-8e3e8e59762950fcb807-49c4-4bf3-b337-13dd76dc9840 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.e60dc2a1-f33c-4a05-9b50-8e3e8e597629b7d74939-88dd-44fb-a175-78e22edfb13f
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.
