Having a chronic illness like vasculitis can affects everyone in your family. But how it affects each person may differ. You may notice that your family routine changes, particularly if your disease is very active. And your relationships with your family might also change.
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Vasculitis and your parents
Your parents might seem overprotective or try to take charge. They might ask you a lot of questions or give advice you did not ask for. If your parents act this way, it might help to remember that they care about you and their intention is not to intrude, they are trying to help, but they may not always get it right. Also, they are coping with their own feelings about your disease.
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Talking with your parents
Try to talk honestly with your parents about your thoughts and feelings, even if it is difficult, do it in a way that does seem like you are attacking them or reactive. Sharing your emotions and telling them what you need can help you solve problems and support each other. Here are some suggestions for talking with your parents.
- Make a list of what has changed in your relationship, both the positive and negative.
- Decide what matters most on the list and share those things with your parents. For example, maybe you want more privacy or more time with friends.
- If your parents are concerned about your ability to take care of your health, try making a plan for how you will be responsible. For example, if they do not want you to keep track of your own medicines, make a chart of the dosages and times. This shows you are willing to take charge. We have included a medication log on the WORKSHEET section that you can download.
- Accept help from your parents. Discuss your strengths and the things you can do for yourself and where you need their help.
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How your parents can help
As a young adult or teenager, you are either independent or becoming that way. It might feel like you are going backwards to rely on your parents again. Be honest about needing to make your own decisions, but also ask for help when you need it. Your parents likely have more experience than you in some situations, such as dealing with health care personnel such as doctors, social workers etc.. They can:
- Help you learn about your vasculitis and treatment options
- Arrange appointments
- Keep you company on trips to the hospital
- Make you meals
- Stay with you when you feel sick
- Help you talk with your health care team or your school
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Living arrangements
If you are a young adult (e.g., 18-21) and live alone, it might become difficult at times. Consider asking a parent or someone else to move in during this time. Or you might move back in with your parents for a while. You might feel like you are giving up independence or cannot take care of yourself. Living with someone during difficult periods can help you meet your physical, emotional, practical, and financial needs. It also gives your family a chance to help.
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Your siblings
Your siblings, might be feeling many emotions, including concern for your health. How they respond depends on several factors, including:
- How close you are
- Their personal way of coping with life and their relationship with you
- How old they are, how mature they are for their age, and their personalities
- How far away they live
You or your siblings might not know what to say, or they may even fear talking with you about disease. So, you might need to start the conversation. No matter their age, your siblings often want to help. They can:
- Keep you company on trips to the hospital or clinic
- Spend time doing things with you that can act as a distraction
- Visit you at home when you do not feel well enough to go out
- Talk and laugh about things