Living with Vasculitis
Being diagnosed with vasculitis can be difficult to process. When you first got your diagnosis, you may have felt afraid, or alone. You may have even been overwhelmed by the large amount of information you had to take in and the decisions you had to make. Rather than surrendering to despair and being discouraged, CVA hopes to empower you with information that can help you better understand and live with vasculitis.
The information in this sections is intended to help you and your family/caregiver take steps to learning more about vasculitis. A better understanding may help you feel more in control and less isolated. We offer tips on developing a strategy for managing the illness, asking the right questions of physicians and getting the right professional and personal support.
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You have been diagnosed with vasculitis, now what?
Getting diagnosed with vasculitis can throw you off. For some people, there are many losses that come as a result. It is important to take time to process.
Things you should do after taking a deep breath and trying to process
- Write down a list of questions you would like answered by your health team
- Ask for information and resource material.
- Educate yourself about your type of vasculitis
- Have a treatment plan, collaborate with your health care team
- Create a support system
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Coping with Vasculitis: A guide
Having vasculitis can make everyday life challenging. When your vasculitis is active, symptoms like joint stiffness, pain, fatigue, or depression can make simple tasks difficult — and sometimes impossible. Since these symptoms are not visible, the people around you may have trouble understanding how you feel.
It’s important not to ignore the limitations that come with this disease. However, there are steps you can take to stay involved with work, relationships, and the activities you care about. Be open to following a few strategies to help you lighten the burden of your illness and maintain a fulfilling life.
Learn how to explain Vasculitis to others
It’s important for family, friends or co-workers to understand vasculitis so they know how they can help. But since vasculitis has so many different symptoms that come and go — it can be hard to describe.
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Start by explaining what vasculitis is not:
- Vasculitis is not contagious — you can’t “catch” it from someone or “give” it to someone
- Vasculitis is not cancer
- Vasculitis is not like or related to HIV or AIDS
Then, you can talk about what Vasculitis is:
- Vasculitis is an autoimmune disease
- Vasculitis is a chronic disease
- There are different types of vasculitis and vasculitis has many different symptoms and affects each person differently
Explain that vasculitis can be unpredictable. Symptoms can appear, disappear, and change. Knowing this may help other people understand your ups and downs, and also the changes that you may have to make in your life.
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Make adjustments as a family
Good communication is important for helping your family adjust to a vasculitis diagnosis. You’ll want to make sure you share details of your vasculitis symptoms and treatment with your family — keeping them informed can lessen their concerns. It will also help them understand why you may sometimes say “no” to activities.
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These tips can also help your family adjust:
- Maintain a manageable schedule with time for breaks
- Reassign household responsibilities as needed
- Ask friends or extended family members to help around the house when possible
- If you have children, talk to them about your vasculitis and how it may affect life at home
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Take time for yourself
While it’s important to learn as much as you can about vasculitis, it is also important to take a break from focusing on your disease when you need to. Living well with vasculitis will more than likely involve making some changes within your family, your profession, and your social circle. Although vasculitis may impact many aspects of your life, it’s important to remember that this disease does not define you. Taking time to do activities you enjoy will help you reconnect with yourself.
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Managing work with vasculitis
Many people with vasculitis can continue to work, although they may need to make changes in their work environment. Depending on what your symptoms are, and the kind of job you have, you may be able to work with your employer to make adjustments so you can stick with your current career.
Tips for managing work:
- Make small changes to your workstation — like getting a more comfortable desk chair (sometimes called ergonomic chairs)
- Request a different or more flexible work schedule — for example, you could work from home on certain days or start your workday later
- Get help from a vocational rehabilitation counsellor (job coach for people with disabilities) to find work that’s more manageable
If the physical or mental demands of your job become overwhelming, you might benefit from switching to part-time hours, if it i possible. You can learn about disability benefits from your company’s human resources.
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Managing school
Many people who have vasculitis are successful at school while preparing to pursue their dreams. School at any level can be demanding, so you should make sure you are prepared to balance tests and homework with the need to take care of your health.
To do well in the classroom, make sure you:
- Don’t overload your schedule — try to leave time for relaxation
- Communicate with the school about your vasculitis if you think it will be helpful — Perhaps register with the school accessibility office and consider telling roommates, your academic advisor, or professors
- Learn about financial assistance opportunities — you might be eligible for financial aid and a number of scholarship programs.
- Think about accommodations you might need — if you expect to miss class sometimes or think you may need extra time on tests, make sure you talk to your professors.
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Find the support you need
Staying connected socially can help you put vasculitis in perspective and build a support system. Make sure you spend time doing activities you enjoy with other people, and identify family members and friends you can turn to when you need to talk to someone.
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In addition to sharing with your family and friends, there are other ways you can find support:
- Individual therapy can help you cope with issues like depression and anxiety
- Couples therapy can help you and your partner communicate as you both adjust to your diagnosis
- An online support group can help you engage with other people affected by vasculitis and learn tips from people dealing with similar experiences. We have created an online forum that you can consider registering.
REMEMBER: Life with vasculitis can be difficult at times, but it doesn’t have to stop you from doing the things that matter to you.