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Your ITP Journey: How to Cope

Medically reviewed by Judith Marcin, MD on February 12, 2018Written by Kristeen Cherney on February 12, 2018
how to cope

Immune thrombocytopenia (ITP) doesn’t have a cure and can be unpredictable.

There are two main types of ITP, acute and chronic.

The acute type usually lasts six months or less. It’s more common in children, and once resolved won’t return.

In the chronic, or lifelong type, you may encounter challenges with this autoimmune disease, but there are ways to manage your condition and improve your quality of life.

Research your condition

Your doctor is your go-to professional for diagnosis and treatment. However, understanding your condition can be empowering. Ask your doctor to recommend resources so you can learn more about the outlook, testing, and treatment for people with ITP.

You should also learn more about the symptoms of ITP, especially if you go into remission. It’s important to know when you need to see your doctor or go to an emergency room.

Invest in self-care

Self-care goes a long way in reducing stress and depression when you have a chronic condition. And such methods of self-care don’t have to require a large monetary investment. The key is to invest in taking time for yourself so you can unwind and recharge.

Consider the following methods of self-care:

  • Take a long bath.
  • Read a book.
  • Meditate.
  • Take a gentle yoga class.
  • Take a walk outdoors.
  • Get a massage, you may need to avoid deep tissue massage.
  • Go to sleep when you need to (even if your to-do list isn’t quite done).

Make your health a priority

When you have a chronic illness like ITP, it’s easy to put your treatment plan on the backburner. This is especially the case if you’re in remission, or if you aren’t experiencing any noticeable symptoms. Life can get in the way, and you may start skipping checkups with your doctor. Even more serious, you might skip blood tests or your treatments.

Managing ITP takes work, but you’ll be happier in the long run if you prioritize your health. Your disease isn’t fatal, but it can last for the rest of your life. You’re better off keeping up with your treatment plan and making modifications as recommended by your doctor. ITP can lead to complications, such as internal bleeding in your brain or other organs if left untreated.

Find ways to prevent fatigue

Both having a chronic disease and excessive bleeding can make you more tired than normal. You may feel fatigued all the time, despite naps and a good night’s rest. Over time, the tiredness can catch up to you and affect your daily activities. This may cause you to be too tired to stay active, but a lack of activity can decrease your energy levels.

Sometimes there’s no avoiding fatigue with ITP, especially if your condition is active. It’s important to try to fight fatigue before it catches up with you. Yoga, light walking, and plant-based foods can all help you boost energy without expending too much of it. Such lifestyle changes may even help boost your immune system.

Avoid excessive bleeding

A minor cut or scratch may be of concern. But if you have ITP, even a small wound can be serious because there’s a chance that the bleeding may not stop. External bleeding is one of the causes of hospitalization with ITP.

Another bleeding danger happens internally. You might have more instances of internal bleeding if you don’t treat your ITP. Excessive bruising is just one symptom of internal bleeding with ITP.

Concerns about excessive bleeding don’t mean you must avoid all physical activities. You should try to limit activities that might pose injury risks, such as:

  • horseback riding
  • football
  • riding a bike without a helmet
  • soccer
  • skiing or snowboarding

It’s important to acknowledge that accidents will happen that you can’t be prepared for. If you suddenly notice widespread bruising, or if you have a cut that doesn’t stop bleeding, you should seek emergency medical care. Your doctor may also recommend having an emergency medication on hand to help stop bleeding, such as aminocaproic acid (Amicar).

Talk to family and friends

ITP can be isolating, especially if you’re the only one in your family or circle of friends who’s on this journey. It’s easy to get frustrated when it seems like your loved ones don’t understand what you’re going through. Be sure to talk to your family members and close friends so they can learn about your condition. More importantly, let them know how they can help you. Chances are, they want to help but may not know how. Even delegating small tasks in your household can make a difference.

Find an ITP support group

Despite having the support of family and friends, it can also help to connect with other adults who have ITP. Ask your doctor about ITP support groups in your area. You may also find online forums if you can’t make it to an in-person meeting. Building these connections can help decrease feelings of isolation.

The takeaway

In its chronic form, ITP can be a lifelong condition. Your case might be mild without needing treatment depending on your age and platelet count. Regardless of your treatment plan, you’ll still need to look out for symptoms of excessive bleeding. Chronic ITP can go between stages of active ITP and remission.

No matter what stage you’re at in your ITP journey, know that your doctor will help guide you through treatments. And when you manage your ITP, it doesn’t have to interfere with your quality of life.

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