Pediatric Vasculitis

Caring for Yourself: Managing Symptoms & Side Effects

People with vasculitis often look healthy on the outside, but internally, their bodies are fighting hard to heal. You may feel pain, weakness, and extreme fatigue. Being diagnosed with a chronic disease brings feelings of sadness and anxiety. You are grieving the life you thought you were going to have and you are also faced with many unknowns. These feelings of anxiety and despression can be worsened by medications, such as steroids, that are necessary to treat your vasculitis. 

The resources on this page are designed to help you take control of what you can control. There are concrete things you can do to nurture your physical and mental health and well-being. 

Managing Fatigue

It is normal to feel fatigued when living with vasculitis. There are many reasons for this. 

  • Fatigue can be related to anemia and other laboratory changes seen in vasculitis.  Specific organ involvement such as kidney, brain or lung disease can also cause fatigue. 
  • Medications may contribute to a feeling of fatigue.  For example, prednisone may cause insomnia and make falling asleep and staying asleep difficult. 
  • Keeping up with multiple doctors’ appointments, several other medical-related visits and taking medications at different times of the day can interrupt your daily schedule and not allow you the time you need to rest and sleep.

It is important to understand that people with vasculitis need more sleep than usual to allow their body to heal.  Trying to keep up with school and your activities in which you participated before the diagnosis of vasculitis may give you little time to rest.  For all these reasons, patients with vasculitis may feel exhausted at times and run down.

What you Can Do

  • Prioritize rest without feeling guilty for needing a break. Taking a nap during the day gives your body time to recover from the silent battle being fought within itself.
  • Maintain a regular daily schedule, even for simple tasks, such as self-care and daily exercise.
  • Try your best to create good sleeping habits, such as avoiding consumption of caffeine in the later part of the day or using your computer/phone late into the evening.
  • Make a regular bedtime routine such as a taking relaxing bath, reading a book or listening to music.

Dealing with Anxiety & Depression

Anxiety and depression can often accompany a diagnosis of vasculitis. When you receive the diagnosis initially, you may have feelings of shock and confusion, especially considering that it is very likely you have never even heard of the disease which you were just told you have.    

Some aspects of anxiety may appear while living with vasculitis. Doctors often do not have all the answers and the unknowns may be overwhelming. Going to your medical appointments and awaiting test results also may cause worry. Undergoing unfamiliar procedures can be scary and taking new medications can sometimes be unsettling.  Prednisone specifically can intensify the feelings of depression.   

Children and teens often miss school due to feeling unwell or having to go to medical appointments. The feeling of falling behind in your classwork and needing to catch up is stressful. You may have concerns about how the vasculitis will affect your daily life (school, sports, socializing with friends) and your future plans.  You may have feelings of isolation when you cannot relate to your peers about your diagnosis.  It can easily feel as though so many things are beyond your control.  It is important to know that there are numerous support systems available to help you to help yourself in order to feel more in control of your life.    

What you Can Do

  • It is important to find supportive family members and friends with whom you are comfortable talking about your feelings. Be willing to try new approaches, such as talking to a therapist or psychologist. 
  • It is helpful to focus on the aspects of your life over which you do have control. One example is to surround yourself with positive messages. This can be through listening to uplifting music, placing an inspirational quote on the home screen of your phone, or reading positive affirmations each day. Another way you can take control is to set small, attainable goals and reward yourself for reaching them. Some examples include tracking your exercise progress, getting adequate restorative sleep, and making time for fun excursions.  Trying to refocus your energy towards things that bring you happiness provides a good distraction from sad feelings and helps to improves your mood and attitude. 
  • Explore new interests, such as reading or doing art activities.  These may provide enjoyment and also provide an opportunity to redirect feelings of anxiety or loneliness. 
  • It is essential for your teachers understand that your medical situation may affect your school performance. Therefore, it is important for your parents, you and school personnel to set up the necessary changes or modifications (such as arranging a 504 plan in the United States) to best allow you to succeed in your school work.  This may help to decrease your anxiety. Find out more about asking for accomodations at school.