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.
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!
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.
TINA use this as your mantra every time you come to a grinding halt
and be positive [ there is no alternative1111]
Hello, I also have ANCA Vasculitis and Lupus. Throughout the years learning to cope with the emotional aspect of these diseases has been challenging but I haven't given up hope. I've learned how to best take care of me and what I do is to love myself. Meditation really, really has helped me. I'm not a religious person but I believe that I am a glimmer of the most High of Light therefore have love to give to others. I do my best to be of service to others by taking a flower to a lonely elderly, taking soup to an ailing neighbor, baking cookies and sharing them. There are so many ways to be of service even in our discomfort.
James Victor Cross (Vic)
Hi All. I know most of the comments are from the USA but on the off chance that someone out there can help me here is my question. I was diagnosed with AAV MPO Jan 2017 and have yet to meet anyone in the UK with AAV. My consultant is actually a renal consultant and looks after me as I'm stage 4 CKD. Also my wife had a stroke 02/07/2016 so I have to look after her as well as myself. I get a bit run down (KNACKERED) from time to time (I'm 82 and my wife is 83).
What I would like is to know is of anybody in the UK with AAV that I can talk to and swap notes. If anyone out there can help I would be most grateful.
James Victor Cross (Vic)
Hi Vic, There is an amazing woman who advocates for AAV in the UK. Her name is Jane L. Edwards. I looked for an email but couldn't find one. She is on Facebook, Twitter and is very active on Instagram if you can look her up and reach out one of those ways. She has GPA, but is an amazing source of information and insight. I hope that helps! Sending support from California!
Vic, check out the Vasculitis Foundation's site. Specifically, fill out the form on this page and scroll to the very bottom to check the location/name of organization in the U.K. that is closest to you. I did this for me and got a wealth of information and a referral to the closest ANCA group to where I live. Here's the link: https://www.vasculitisfoundation.org/support/find-a-chapter/chapters-support-groups-and-area-contacts/ Good luck and be sure to take care of you, too!
Can anyone tell me what the best pain medication to talk for severe pain I have been taking cocodamol and it’s not touching it. Any help and advice will be appreciated