*Note from A Chronic Voice: Dana Hall is a clinical psychologist who lives with an autoimmune disease herself, which made me excited to have her guest post on the blog! I always love reading professional tips written by a fellow chronic illness person. She specialises in trauma therapy, relationship dynamics, and chronic pain management. She can be found on BetterHelp, which is especially useful during this COVID-19 lockdown where access to clinics are limited.
In this article she shares about the grief experienced when you live with chronic pain that is silent and invisible to everyone one else except you. She talks about the mental, physical and emotional distress this causes, and how loved ones can and should approach a person with chronic pain. Have a read and feel free to discuss in the comments section below!
By: Dana Hall LCPC, MA, TF-CBT @DanaHallTherapy
Table of Contents
The Mini Grief Cycle When You Live with Chronic Pain
In a fast-paced society where every moment counts, what happens when your body cannot keep up with the demand? For those with chronic pain, the feelings of overwhelm often trigger a daily mini-grief cycle. They find themselves navigating the terrain of denial, anger, bargaining, depression and, instead of acceptance, find themselves stuck in the muck of despair. This despair consists of a lack of motivation, a loss of personhood, and of agency. However, there are ways to see this through with greater focus on wellness and resiliency.
Pin to Your Chronic Illness & Chronic Pain Boards:
Someone You Know Probably Lives with Chronic Pain
Estimates indicate that over 50 million Americans have chronic pain1. With just over 20% of the adult population having limitations to their daily lives it is likely that these invisible disorders are impacting someone we know.
Many clients identify as having chronic pain such as; spondylitis (arthritis), diabetes, heart disease, fibromyalgia, arthritis, lupus, migraine disorders, MS, and even cancer, frequently report in session that people in their lives do not understand the need to have flexible expectations when it comes to their chronic pain disorder.
The Complexity of Chronic Pain & the Invalidation Thus Experienced
Compounding the issues can be the frequent variance in mobility, functionality, and capacity both physically and emotionally that a person with chronic pain manifests from one day to the next. Persons with chronic pain can feel chronic invalidation when others around them that cease to honor their experiences.
For example, if someone had a broken arm you would not ask them to reach for the piece of paper on the floor, you would see the limitation and alter your request. Those with internal injuries such as nerve pain, muscle weakness, mental fog, and migraines need to tend to their symptomatology and may not be able to fully engage in physical activities.
In addition, we have come to understand more about the neurological roots of pain that leave those suffering with chronic pain devoid of external causes2. However, we still often make little concession for those needing additional self-care, expectations seem to vacillate from wanting them to engage fully or leaving them out completely. Increasing our mindfulness on how to be more inclusive can only serve to benefit the individual as well as society at large as we thrive on diverse contributions.
The Physical, Mental & Emotional Distress from Feeling Invalidated
It is not surprising that my clients’ report that social isolation, feeling left out or discarded, and invalidation from friends, family, and treatment professionals, contribute greatly to overall emotional distress.
Conversely, some clients intentionally do not share how they are feeling and/or remove themselves from social interactions. Their silence can be brought on by having such intense symptoms for so long that it no longer feels relevant to share their feelings or fear of being ridiculed or minimized or this concept that not acknowledging the reality of their pain will in some way make it ‘less real’ and perhaps it will ‘go away.’
This distress can feed into some of the subsets of symptoms they experience. Sleep disturbances, fatigue, trouble concentrating, decreased appetite, and mood changes negatively impact lifestyle and can increase pain and dampen overall mood; the frustration of dealing with this can result in depression and anxiety3. By being aware of these symptoms loved ones may be able to spot the incongruence in what is being said and what the individual is experiencing; thus creating an opportunity for connection.
The 3 Foundational Strategies I Use with My Clients, for Coping with Chronic Pain
These are the foundational strategies I examine with clients and family members to help them live well with chronic pain:
1. Acknowledgement is Power
When we, those of us with chronic pain, work to accept our bodies as they are, we have greater attunement and opportunity to navigate our functionality. We must accept that pain exists. It does not define us, and its presence may shift and alter.
When we welcome it to communicate to us, we can best respond to its needs. For family, this may look like offering to help adjust plans, assist in chores or other responsibilities. It means using caution in words no matter how well-meaning, for instance saying, ‘you don’t even look sick’ may be intended as a compliment but it is often taken as a minimization to those coping with chronic pain.
Pin to Your Chronic Pain & Awareness Boards:
2. The Right Questions are Key
The right kind of questions can show that you genuinely want to understand and convey empathy and hope. Helpful questions can be specific such as ‘did you experience night sweats last night’ or open-ended questions like, ‘how would you describe the sensation in your joints?’.
Using a scale or range may help externalize what they are feeling. You can obtain a rough idea of how much pain they have by asking them to rate their pain on a scale of 0 to 10 where 0 = no pain and 10 = the worst possible pain.
3. Support is Vital
Encourage your loved one to be an active participant in their treatment. Be willing to go with them to appointments, but do not feel like it’s your job to ‘fix them.’ Sometimes the power of just holding space and being present can make all the difference. Those with loved ones who are coping with chronic pain must also take care of themselves and not feel guilt in prioritizing those needs.
Pain is a whole systems issue; it does not just reside in the body but in the mind as well. Thus, it impacts the psychosocial life of not only the chronic pain survivor but their loved ones. As we come together to understand and treat chronic pain more effectively, we cannot lose sight of the holistic approaches needed to support not only the one coping with pain but those systemically connected to them.
Pin to Your Chronic Pain Boards:
*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
If you liked this article, sign up for our mailing list here so you don’t miss out on our latest posts! You will also receive an e-book full of uplifting messages, quotes and illustrations, as a token of appreciation!
- 1 Division of Health Interview Statistics, National Center for Health Statistics, CDC;
- 2 Mood and anxiety disorders in chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome: results from the LifeLines Cohort Study. Psychosom Med. 2015; 77: 448-458
- 3 Albrecht DS, Granziera C, Hooker JM, Loggia ML. In vivo imaging of human neuroinflammation. ACS chemical neuroscience. 2016;7(4):470–475.
Pin & Help to Share the Post!
I love this quote, Dana, “Pain is a whole systems issue; it does not just reside in the body but in the mind as well. Thus, it impacts the psychosocial life of not only the chronic pain survivor but their loved ones. As we come together to understand and treat chronic pain more effectively, we cannot lose sight of the holistic approaches needed to support not only the one coping with pain but those systemically connected to them.” This is so true, yet that’s not how our health system is set up. I’ve decided to write my next post about this and am including this quote with a link to this article. Thank you for the inspiration!
I love that quote too, it really does sum it up, doesn’t it? I can’t wait to read your next post about it, ping me when it’s up!!
I will. Thought it would have been done by now:)
Thank you for this excellent reminder. My FND symptoms aren’t normally painful, but I’m now dealing with a nearly-constant headache thanks to migraines. My partner has a residual headache from a brain injury and hip pain from an acetabular fracture a couple of years ago. I do my best to honor both of our symptom sets and pain levels, but this has reminded me that I may be taking his situation too much for granted, as he’s an incredibly stoic person and has had a lot of stress added by finally getting a new job and being able to work again. There’s a lot to sort through with that, and I do my best not to ask him to do things that I know increase his pain, but that doesn’t mean that things are being equitably managed. I appreciate this reminder.
I’m sorry to hear of this current bad situation, Alison. I truly hope that things do improve soon somehow. Chronic pain can be a real b*tch, hey? Sending lots of love to you both.
“…chronic pain can feel chronic invalidation when others around them that cease to honor their experiences.” – I feel like I have to keep going through this. Reminds me once when I had severe pain when I lived in London and I wasn’t being heard (well the appointment I got was 6 months away, one was even a year away!). Someone advised that I exaggerate my pain and go to A&E to get treated quicker. Somehow I feel people around us who don’t experience chronic pain will only get it when you have the worst flareup.
It can be so tiring to just wanting to be believed.
Oh yes, I really know that feeling. In fact, it nearly cost me my life as I questioned whether my pain was truly an exaggeration. So I waited for two days before rushing to the A&E and by then there was gallons of water in my lungs, and it did permanent damage…forever.
An excellent post with such pertinent points. I particularly like how you’ve included encouragement with support; a lot of people likely don’t know how to support someone with chronic illness/pain, or think they have to ‘do’ things. Sometimes just being there, being willing, and encouraging that person without pushing is hugely valuable. I find it can help just getting a reminder that we are active participants in our journey and healthcare treatment can help, or a reminder that people are there, that my feelings and experience are valid. Excellent suggestions.xx
Thank you for the comment, Caz. Yes I think often people just don’t know what to say or do and end up giving advice or saying something invalidating. But often it really is as ‘simple’ (in quotations because – not so simple in reality :p) as showing up, and being there.
For me, the most irritating thing is when someone tries to ‘fix’ me or offer solutions when I just want to have a little moan about symptoms. But then I know it comes from a good place, so I try to see their viewpoint too as feeling a bit helpless but wanting to do something for me.
Same! For the most part I try to just let it go into one ear and out the other. Often they have good intentions so I try to view it from there, like how my psychologist advised me. But if they get pushy it really gets annoying and I tell them off nicely, or cut them off.