Pediatric Vasculitis
Caring for Yourself: Managing Symptoms
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. Fatigue often begin before diagnosis and may persist even during or after treatment. 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.
- You may find value in using the Spoon Theory to help you manage your time and as a tool to help explain your need for more rest to friends and family.
- Renew your mental energy with activities such as meditation, spendng time with friends or family, watching a favorite movie or television program, or reading a book. This quiet or downtime is necessary to help you cope with the fatigue and stressors of vasculitis.
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.
Self-Care
Although physicians play a significant role in your care, effective vasculitis treatment requires not just medical intervention but behavioral intervention as well. It is vital to understand the importance of self-care to reducing stress and nurturing your mental and physical well-being.
Self-care looks and feels different to every person. Use the ideas below to help you develop self-care habits and routines that work for you.
Prioritize
Prioritize the things you need to get done each day; this will help lessen feelings of not being in control. Work towards accepting the new “normal” as you experience changes in your daily routine, school, family, and social time.
Set Limits
Recognize your strengths and weaknesses. Know what you can handle on your own and when it is time to ask for help. There is no shame in acknowledging your limits. It is better to ask for help instead of getting burned out. It is also a good idea to practice the art of saying “No.” Do not agree to everything to please your friends or a family member.
Join a Support Group
Support groups are the perfect place to talk with other young people impacted by vasculitis; they provide encouragement and offer an opportunity to discuss anxieties and concerns with others who share the same experiences. Having a place to exchange information and advice may provide a sense of control and reduce feelings of hopelessness and helplessness.
Learn More About Vasculitis Foundation Support Groups
Consider Seeing a Therapist or Counselor
Whether it is a counselor, social worker, or psychologist; it may be a good idea to have a space that is yours to talk about your thoughts and feelings and gain strategies for coping.
Move Your Body
The benefits of exercise are well proven for both mind and body. Go on light walks or other activities when you can. Get in the habit of moving daily.
Nourish Your Body
Ensuring you receive regular nourishment with a variety of foods is essential. When the body can depend on regular nourishment, there is less physiological stress and it is more capable of focusing on healing.
Prioritize Sleep
Sleep deprivation is detrimental to a person’s thinking and physical and emotional state. It is not easy fitting this into a schedule filled with academic, social, and recreational activities. When trying to manage the impact of vasculitis, a shift to healthy sleep hygiene is essential. To improve your sleep quality, try to go to bed at the same time every night. Use calming techniques to help you fall asleep if you need to.
Whatever you are feeling-grief, exhaustion, anxiety, fear, or anything else-is okay. Permit yourself to feel what you feel. Recognize those feelings and acknowledge that they may be different than anyone else who has vasculitis and that is okay.
Sometimes self-care is allowing yourself to feel sad or angry. It is okay to have these emotions and let them out. You can write about or draw your feelings, which may help you process what you are feeling.
The stress from having vasculitis and the treatment for vasculitis can be overwhelming at times. It is vital to slow down. Practice calming your nervous system with just a few deep breaths. Breathing affects the whole body; it increases feelings of calm and relaxation and can lead to a decrease in the feelings of pain.
Close your eyes and breathe deeply – your abdomen should rise, but your shoulders should not. Count to four, then slowly release your breath. Repeat for 1 to 2 minutes. Do this whenever you need to feel more relaxed or focused.
Studies have shown many benefits of mindfulness for both mind and body. There are so many ways you can incorporate mindfulness into your life-meditation, yoga, listening to music, pilates, or simply breathing deeply are great ways to reduce stress.
Cultivate a Positive Attitude
Having a positive attitude can help set the tone for all you do. You may not control what happens to you, but you can change how you react. To help you cope, talk with other young people with vasculitis. You may also find it helpful to speak with friends, religious or spiritual advisors, counselors, or healthcare professionals.
Try Something New
Illness can take a toll on your mental health. It is essential to try to reduce stress by doing things you enjoy, but also consider trying something new that is rewarding and maybe a little exciting for you.
Appreciate Nature
Take time to enjoy nature and the things around you. Find a spot to appreciate the sunrise or sunset. Take a walk , ride a bike, go swimming. There is something about the way we embrace nature that makes us feel good.
It may be difficult for some friends and family to understand what you are going through unless they have gone through it too. It is important to find ways to express yourself in a way that allows you to feel heard and get the support you need.
Guided imagery, healing therapies, and creative outlets such as drawing, painting, journaling, poetry, photography, or dance can all lower stress. The key is finding a way to channel your emotional state in positive ways.
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