Paroxysmal nocturnal hemoglobinuria (PNH) can make you feel tired in ways that don’t go away. You may also have pain, shortness of breath, or other symptoms. It’s important not to overlook these feelings. Keep track of your symptoms over time. Talk to your doctor about your fatigue or any changes you notice. Ask them about any treatments or other strategies that might help.

The more you know about PNH, the better. Jot down any questions you have so you remember to ask them at your next appointment. Remember that your primary PNH doctor won’t be best to answer every question. Try reaching out to others on your care team, including your nurses. If you want to explore your diet or mental health, ask for a referral to an expert in that area.

To live your best life with PNH, it helps to take a holistic approach. Your emotional well-being is critical to how you feel and how you’ll meet the challenges of living with this condition. Pay attention not only to how your body feels, but also to how you feel overall. A chronic condition comes with lots of emotions, and it helps to honor those. Work toward habits of mind that help you feel empowered.

Support groups are a great way to connect with other people who really know what it’s like to have PNH or another chronic illness. If you’d like to meet people in person, ask your care team or a local advocacy group about options. You also may find lots of ways to connect with other people online. The shared experiences among people in support groups can help to connect and fulfill your medical and emotional needs. 

It’s important not to forget about those general health needs that anyone has. Try simple exercises such as stretching, taking a class at the gym, or heading outside for a walk around the neighborhood. Don’t forget to drink plenty of water. Ask your doctor if there are any other recommendations they have for you based on your PNH and any other health conditions you have.

A diet with lots of fruits and veggies will help support your immune system and more. Make sure you have healthy snacks on hand to keep your belly full and your energy up throughout the day. Consider making extra meals to have on hand for days when you aren’t up to cooking. Ask friends or family to help you out with a meal now and then.

Sleep is also key for good physical and mental health. Aim for 7 to 9 hours each night. It helps to go to bed about the same time each night and wake up about the same time each morning. Make sure your room is set to a comfortable temperature. Avoid screens for a time before you go to bed, especially if you’re having trouble sleeping. Talk to your doctor if you need extra help with rest.

If your PNH has you feeling fatigued and under stress, your sex life might not be high on your list of priorities. That’s perfectly normal and OK. But if you’re struggling in this area, let your doctor know. PNH can make it hard for men to get or keep an erection. If this happens to you, talk to your partner openly. Go easy on yourself and explore other ways to feel connected and experience intimacy.

Complementary and alternative medicine (CAM) therapies won’t treat your PNH. But they may help you to feel more relaxed, hopeful, and in control. It’s a good idea to check with your doctor first to make sure it’s OK to try something new. Some options may include:

• Vitamins or other supplements
• Probiotics
• Meditation
• Acupuncture
• Deep breathing exercises
• Chiropractic medicine
• Massage

Work and family life aren’t always easy, even when you aren’t managing a chronic disease like PNH. Think through what matters to you. Make your work and family life a priority so you can tackle what you can. Delegate or forget the rest. Talk to your employer about your options so that you can continue working or take the time you need. Talking openly with loved ones and friends can help them support you best.

Another way to stay engaged and happy through a chronic illness is to keep up with activities you enjoy. Make time for a favorite hobby or try out a new one. Read a book or watch a good movie. Try an app to learn a new language or explore something new. If you’d like to travel, don’t assume it can’t be done. Talk to your care team about it. Take steps to ensure you have a plan and access to care in case something goes wrong. 

To care for yourself with PNH, it pays to be proactive. Think carefully about what you want out of life. Keep track of the things that are getting in your way, and don’t hesitate to ask for help. You’ve got a right to understand your PNH and its treatment. You should know what each and every test result means. Make sure you have a care team you can talk to and trust. Don’t forget that you’re a key member of your team, too.