The Emotional Toll of Illness

Anxiety. Fear. Depression. Grief. Rage. Have you experienced any of these after receiving a diagnosis? Whether patient or caregiver, the emotions surrounding illness can take up an unexpectedly large chunk of one’s energy.

Vasculitis primarily affects the physical body. Inflammation is a visceral symptom, causing pain and discomfort while threatening more serious complications. But as any chronic illness patient knows, there is an insistent overlap between mind and body. Research suggests that stress may even trigger illness.

Those of us with vasculitis may experience a range of feelings that are pelted at us like stones, causing psychological bruises. Though dynamic emotions are unpleasant, knowing this is part of the lifestyle can actually give us freedom. It’s relieving to know we are not the only ones experiencing a wash of feelings, that others go through the same cycle and can offer support or encouragement. (It also helps to know that we’re not just going crazy!)

Fortunately, we live in an era where many doctors and researchers are examining the human condition more holistically. During a specialist visit, a nurse may ask mental health-related questions, such as, “Any recent thoughts of physical harm?” Some doctors may refer patients to a psychiatrist for additional help.

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Types of emotions we may experience

Anxiety can result from schedule changes, doctor appointments, lab visits, or even taking medications. Sometimes my nerves feel shredded raw, and I can only focus on my basic needs. It’s too much to even make dinner, go grocery shopping, or complete other routine tasks.

Depression can cause similar challenges. I’ve been dealing with it on and off since my diagnosis in 2005. After so long, I can now recognize when it’s coming. While some people might feel overwhelmingly blue, my depression first manifests as listlessness and lethargy.

I’m glad I’m able to view depression for what it is, rather than labeling myself as “lazy” or “unproductive.” Slowing down and engaging in extra self-care usually gets me back on track. Years of living with depression have accustomed me to its ebb and flow and allowed me to find coping tools.

Grief is complex and can manifest in multiple ways. Those of us with chronic illness may mourn the physical strength or abilities we once had. Maybe we no longer recognize ourselves in certain areas of our life, such as work, relationships, or hobbies. Perhaps we used to belong to a beloved community, but can no longer participate in it.

Regardless of the reasons behind grief, it’s a valid emotion and worth analyzing. Validating our loss is crucial to understanding our emotions and moving through the healing process. It can be helpful to familiarize ourselves with the stages of grief and apply them to our illness.

Anger or intense frustration can occur when life feels out of control and we lose our emotional balance. It doesn’t have to result in violence or destruction to be harmful.

Seething rage could bubble up inside our chest when we least expect it. Maybe we’re aghast at someone’s reaction to our illness, or fed up after a lengthy call with our insurance provider. Whatever the situation, anger can sink in its talons and carry us away if we don’t learn to combat it.

How to cope with these emotions

Of course, all of these emotions may overlap and reinforce one another, ultimately rising to detrimental levels. Even people who have their illness largely under control may struggle with unusually vibrant feelings.

So what can we do on the days that feel heaviest?

• Set up a support system of people you trust, and with whom you feel comfortable discussing what’s bothering you.
• Create a safe space filled with items that bring you joy and peace.
• Express feelings through journaling, art, or music for a creative release.
• Remind yourself that these emotions are temporary, and tomorrow is a new day.

Whatever you feel is valid. Navigating the world of illness is strange and uncomfortable, and reacting to it is natural. Let yourself engage with feelings, then pick yourself up and carry on. You are strong!

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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.