The People Part of Pain
By Lynn Westfall @themodemlisa
I was once told that your behavior and general traits, tend to mimic the three people that you spend the most time with in your life. While I couldn't find anything specifically calling this "Circle of Three" out, I did find some interesting information on how we tend to share DNA with our friends: https://www.bbc.com/news/science-environment-28295969 And that the "Chameleon Effect" is a real habit that humans have developed for survival purposes. https://www.verywellmind.com/what-is-the-chameleon-effect-5114522
I also feel that the comment not only felt accurate to my experience at the time, but follows me to this day. For better or for worse (no pun intended), we are made up of our experiences and those experiences tend to be shared with those around us. Sometimes, we can't choose the people that were around or interact with the most, and that can bring challenges, especially when we experience chronic pain or when someone in our life is dealing with chronic pain. What your "Circle of Three" is only focused on chronic pain? Can you live a healthy life without a light in your circle? Undoubtedly those around us will influence our lives, so let's get to the bottom of how these relationships impact and are impacted by chronic pain, how we can build a better circle and become a better part of the circles we're already in!
Understanding Your Circle of Influence
It's important to draw some distinction between "Your" circle, or the three relationships most impactful to your life, versus the circles you are a part of. If you're a parent, your under adult age child is not likely to be a part of your circle. Not because they aren't involved in the majority of your time, but they aren't as likely to have influence on you as you are going to have on them. That's not to say it is not the case for some people and it's not a negative relationship, but it might mean your taste in music leans heavy on the nursery rhymes. If you're a caretaker to a parent as an adult, that parent may not be in your circle, even if you spend the majority of your time taking care of them. For many people it would be hard to avoid this strong of an impact on your personality, actions and feelings but some are able to separate their lives from the act of the caretaking they have to do and its more of a duty or job. On the other hand, that parent, depending on their level of activity may only have that child caretaker in their life and struggle to have more than a circle of one. Maintaining our circle (or circles) over time as we move, grow and change, involves different skills in different life situations.
It may be easy when we're seven years old to define our three "best" friends as our circle, and as I recall, there was a LOT of mimicking going on at that time! Though arguably Madonna was a member of our circle based on how we dressed. But as we grew into adults and found that friends, co-workers and even family members had come and gone, we learned that our circle would have to adapt, change and grow along with us. This circle doesn't just change how we dress, the music we listen to or what celebrity crush we have, it changes our perspectives and behaviors. When I had a friend struggling with chronic mental health challenges and extreme DEPRESSION, I found myself struggling to maintain a healthy outlook and similarly when I was around friends focused on healthy EATING, I found it easier to make healthy food choices. I was a social cigarette smoker for many years before I ever carried a pack of my own (sorry for all the free smokes!) and found it very hard to quit when I lived with a smoker. There are also subtle habits I picked up on without noticing, such as my Dad laying on the couch all night eating candy bars after even the smallest amount of work.
Overcoming the deeply ingrained patterns of our parents can be some of the hardest and almost unbreakable if they remain in your circle throughout adulthood. When you're challenged with a health condition causing chronic pain it can be even harder to see when the circle may be adding to the pain rather than healing it. It's also more likely that your reaction to your pain is having an impact on the circles you are in and being mindful of how our pain is effecting others is important to understand. Cultivating a circle with resilience to the negative times is critical. Even if you're all in pain, as a circle you must have some light to hold onto. Just one positive person in the group can infect the others!
I've broken out our common relationships into Categories of Influence to help discuss each area:
Categories of Influence
A. Family
1. Parents and their initial impact
2. Immediate family members
3. Extended family
B. Community
1. Friends and close acquaintances
2. Support groups and chronic pain communities
C. Professional Caregivers
1. Doctors
2. Nurses
3. Therapists and other healthcare professionals
D. Others
1. Co-workers
2. Extended social network
The Impact of Family on Chronic Pain Experience
We adapt to them more than they tend to adapt to us, but overall in a lifetime it does take on a more mutual role. How our perception of pain is influenced by our parents will certainly vary by parental relationship as with all our nature vs. nurture type situations we may never know the true impacts. [1]
At 14 when HS first appeared I don't recall deeply involving my parents. The reaction I received from my doctor heavily influenced how I talked with my parents about the situation, which I'll discuss below in the Professional Caregiver section. I know as I grew older and HS started in more intimate areas I grew more seclusive with my condition and rarely shared what I was experiencing with my parents. Later as an adult my Mom would confirm that she knew little about what was going on even though she was active in my daily life. Because my relationship with my Dad was strained in other ways, I felt I knew his reactions would make me feel worse. There was an embarrassment that came with HS in those early years as a teenager lacking the mental balance to understand which my Dad's attitude increased exponentially! He was bullying me over my weight, telling me I smelled or that in general I was gross so I was never going to share what I actually that was gross on my body! I was blessed with an incredible Mom, who would have given me all the comfort and sympathy I asked for, but I wasn't going to take the risk of my Dad finding out or my younger brother.
Yes, some of us are blessed with siblings and/or extended family who have influence over us and our parents. Being a sibling to someone in chronic pain may mean your parents have less time for your needs and create a conflict between you and your sibling. [2] If you're the sibling in chronic pain you may not even know that your pain is also impacting your sibling because your focus is overtaken by the chronic pain. Dynamics with our siblings impact our mental development in a number of ways and of course this is different for everyone. Some siblings are a close circle of friends, while others call each other enemy. As with parents, siblings warrant their own discussion because of the uniqueness of each relationship. I'm personally fascinated by twins and their dynamics when it comes to chronic pain.
Depending on our age and overall constitution to consciousness, pain can be as if putting blinders on, and our families can bear the brunt of our attitudes. Deep breathing, meditation and other mindfulness practices should be implemented as early as possible in a chronic pain journey for the sake of you and your circles. Many times in my life, family members unfortunately contributed negatively to my attitude. Some of them are challenged with mental health conditions which I didn't understand, others had negative influences in their circles and became ambivalent or chose to remain ignorant to my health concerns as well as their impact on it. As family members we should strive only to send pure love to one another. Share love and peace as much as possible by trying to see inconsiderate or ignorant behaviors as opportunities for growth throughout the circle. Since many of us will be connected to our family members for the duration of our lives, we should seek out understanding and avoid, avoidance. If there is a family member that is a continuously negative influence and they refuse any positive changes as hard as it may be, you may have to separate yourself from that person and make sure your circle is not influenced by them as well.
The Role of Community in Chronic Pain Support
Building friendship is truly a topic unto itself, there are many studies on the value of having non-family member connections that you consider reliable. Studies show friendship may be even more critical than romantic relationships. https://www.apa.org/monitor/2023/06/cover-story-science-friendship https://www.verywellmind.com/the-importance-of-friendship-3024371
As someone that didn't naturally gravitate to building friendships, I found these studies that most surprising. When I was young I typically had one bestie that would turn frenemy on me and eventually we'd fall out entirely or replace each other and move on. These studies also showed that it wasn't just deep, lasting friendships that mattered but even our tendencies to open up to acquaintances and strangers with personal details. This ability to connect is at the core of the "Circle of Influence", these are the three people we are most connected with and depending on the relationships we have that connection may be strong or weak. If the connection of your circle is weaker, then the mimicking of attitudes and behaviors may be weaker as well. That doesn't mean that the circle doesn't hold value, but the benefit may not be as strong. If your circle is three acquaintances that are only aware of small parts of your life, you may not take their influence as seriously. Work on mentally allowing yourself to be open to connection, even when you're worried pain will get in the way. Find support groups in your local area (maybe even places you already go like a local church or community center) or online groups where you can build acquaintances and start to share more of your experiences with others. Be mindful of their lives, even if they're only giving you small details make sure you remember (take notes if you need to) and truly give thought to what they are sharing. What you put in is what you'll get out in the long run or as Paul McCartney wrote "And in the end, the love you take, is equal to the love you make..."
When you're part of a circle with someone in chronic pain, it can become easy to translate their habits into your own. They can't go out, they're uncomfortable in a benign environment or they're unable to listen to your needs, so what can you do? Always make space for yourself but remain kind. No one wants to feel like they're bringing you down and it can spiral when someone is in chronic pain and unable to make a change to their current situation. Stay honest with them and let them know if you need time away that it doesn't mean you care less about them or their challenges, but for you to be the best you can for them, you have to protect yourself. Make sure you have additional support, for instance, having a circle where you are the only one in good health you may want to also find a Yoga or Fitness class where you can connect with other health minded individuals. It's important not to take an approach of blame when a person is in chronic pain, because they are likely already blaming themselves uselessly.
If you're in chronic pain, protect your friendships by maintaining a balance between how much of your focus is on your pain vs. focused on the lives of the others in your circle. Redirecting your focus onto others can be a slippery slope where you attempt to change or control others, which you want to avoid, but if done right, it can strengthen your relationship while providing you some much needed relief from your own experience. We should all be careful to listen more and only speak when truly needed. Just verbally vomiting all over a situation can make things much worse than they really are. When we listen to our friends and acquaintances and build understanding we are also giving our minds something other than pain to think about. Having a community around you that understands your pain because they're listening to you and only speaking in compassion will help you to survive those hard pain moments. Don't forget that when you're in chronic pain you may not have as much social energy as others or even yourself when your pain levels are low. Keep track of how your social interactions are adding or diminishing your energy daily and balance accordingly. If you have a circle with a friend that needs more compassion from you, you may have to rely on someone else in your circle to better support you and that flow can look different on a minute by minute basis. Be open and flexible to adjusting your interaction and don't allow yourself to feel shame when you're not as social as you planned to be. Take notes from the My Spoonie Sisters podcast and the Spoon Theory, created by Christine Miserandino, which Jennifer Weaver has adapted into her perspective she calls ‘Spoonie Redefined’. Become a part of the #spoonie community to #grow your circles.
Professional Caregivers
There is a lot to unpack when you have a history as long as I do with professional caregivers and I've had a variety! From traditional western medicine family doctors, specialists, surgeons and nurses to naturopaths, acupuncturist and Chinese medicine practitioners. Remember that doctor I mentioned above who diagnosed me at 14? The words he told me would shape my relationship with HS; "There is nothing you can do", "This is just going to happen with puberty and maybe go away", "Someone else in your family probably has it", "You're just going to have to live with it". This dismissal of what became a life altering condition had me hiding and denying the increase in my symptoms for years. But these aren't the worst comments doctors have made to me over the years. Which I'll save for something all about misunderstandings in the medical profession and chronic pain! Sadly no type of practitioner created what I would consider a strong relationship with me, since I don't actually see any caregivers at this time.
With chronic pain, many of us have been misunderstood or even mistreated by professionals unaware of the harm they were doing by following the wrong guidance. It's easy to forget that these "professionals" are still humans and like any profession, some are trained better, more open to alternative thinking or listen more to their patients than others. If you are dependent on caregivers due to a health condition the relationship can certainly start to feel like a close familial relationship and if your limited they can end up being the only ones in your circle by default. We're sharing intimate parts of our lives with these caretakers in the hopes that they can help us, so when the outcome is negative, like me you might end up recoiling from professional caregivers altogether, which is not always a healthy choice! (Or a choice at all for some). So how do we build healthy relationships with healthcare providers? Communication is key, don't hold back but also remember the level of your relationship. If you have a new doctor you may want to hold off on some personal details until you're clear on the nature of your relationship.
Listening is a two way street so don't expect them to listen if you won't! Listening doesn't mean obeying. Listening to your doctor should mean clearly understanding what they have to say about your situation and then sharing your perspective with them clearly so you can both agree on a plan of action. Agreeing to a medication or procedure you don't agree with, just to end a conversation is not going to help you, be honest about what you are willing to do with your body. Ask your circle to be a part of your relationship with professional caregivers. When we're in pain, we cannot always think through situations and make good decisions and this is where having a circle of influence can become a safety net and support system. If you cannot always be your advocate you may need someone from your circle that understands the medical guidance you have been given so consider keeping them informed and potentially allowing them to develop a direct relationship.
Managing Relationships in the Workplace
Before the Americans with Disabilities Act of 1990 (ADA) The ADA: Your Employment Rights as an Individual With a Disability | U.S. Equal Employment Opportunity Commission (eeoc.gov) there were far more concerns about sharing information about your chronic pain. Today while there are protections, there are also still stigmas. Can you work as much as your healthy colleagues? Will you request costly accommodations or special treatment? Can you perform the same tasks as others? Sometimes these concepts are in our minds and other times they actually cost livelihood. As someone living with chronic pain you have to be mindful of the impact your condition has on your work responsibilities and if your pain is reflecting in your attitude in the workplace. Remote work has been a blessing for many of us with chronic pain! Turning off a camera rather than having to run quickly from a meeting room is a huge difference when it comes to an unexpected issue. Even getting in and out of a car can empty some of our spoons! So it's heartbreaking that there has been such a movement to get people back into traditional offices. Revenge of the Office - The Atlantic
For those of us with "invisible" illness, opening up in the workplace can mean seeing a shift in our treatment from when we were still hiding our truth. But for me, most of the situations involved my pain and symptoms becoming so intense I could no longer hide them. This has shifted my habits to always share upfront. I even apply and check that I am disabled now (for better or worse I have not received an offer when I selected that I had a disability). In my last role and now in my consulting work I do share as much of my life as possible but I am also (clearly) an open person and that may not work for everyone. You may also find that co-workers are quick friends and easy to add to your circle, but be cautious that you both see the relationship the same way. Chronic pain can skew our thought processes at times so make sure your current circle is also aware as new influence from a new role comes into your life.
Strategies for Cultivating a Positive Circle
Identifying toxic relationships and their impact on pain
Let's face it - not all relationships are healthy, and when you're dealing with chronic pain, toxic connections can make everything worse. It's like trying to climb a mountain with someone constantly pulling you back down. These relationships might involve people who dismiss your pain, make you feel guilty for your limitations, or drain your energy without offering support in return.
Take a moment to reflect on your circle. Are there people who leave you feeling worse after interacting with them? Do some relationships seem to amplify your pain or stress? These might be signs of toxic influences that need addressing.
Setting boundaries and practicing self-care
Setting boundaries and prioritizing self-care are crucial when managing chronic pain. It's not about pushing people away; it's about creating a protective space that allows you to manage your condition effectively. Here are some techniques I've found helpful:
1. Be clear and direct about your needs and limitations.
2. Learn to say "no" without guilt when you need to prioritize your health.
3. Communicate your boundaries consistently and calmly.
4. Recognize that it's okay to limit time with people who don't respect your boundaries.
5. Prioritize rest and activities that bring you joy.
6. Practice mindfulness or meditation to manage stress.
7. Maintain a balanced diet and exercise routine within your capabilities.
8. Seek professional help when needed (therapy, counseling, etc.).
Remember, setting boundaries and practicing self-care are not selfish acts - they're essential for managing your spoons effectively. By taking care of yourself, you're better equipped to maintain positive relationships with others and handle the challenges of chronic pain.
Seeking out and nurturing positive influences
Just as important as weeding out negative influences is actively cultivating positive ones. Seek out people who uplift you, understand your challenges, and respect your boundaries. This might mean joining support groups, connecting with others who have similar health challenges, or deepening relationships with understanding friends and family members.
Don't be afraid to be vulnerable with these positive influences. Share your experiences, both the struggles and the victories. These connections can provide invaluable emotional support and practical advice for managing chronic pain.
The Caregiver's Perspective
Being a caregiver to someone with chronic pain comes with its own set of challenges. It's a balancing act of providing support while also maintaining your own well-being. Caregivers often face emotional strain, physical exhaustion, feelings of helplessness, and potential resentment or guilt about the limitations imposed by the chronic pain condition.
If you're a caregiver, it's crucial to maintain your own well-being while supporting others. Here are some strategies:
1. Set aside time for yourself each day, even if it's just 15 minutes.
2. Don't hesitate to ask for help from other family members or friends.
3. Join a support group for caregivers to share experiences and advice.
4. Prioritize your own health with regular check-ups and self-care.
5. Communicate openly with the person you're caring for about your needs and limitations.
Remember, you can't effectively care for others if your own spoons are depleted. Building a support network can provide emotional relief, practical help, and a sense of community. Consider joining online or local support groups, connecting with other family members or friends who can provide respite care, and exploring professional support services in your area.
Conclusion
From family and friends to healthcare providers and coworkers, each relationship plays a role in our pain management journey. Positive, supportive relationships can provide emotional strength, practical assistance, and motivation to keep pushing forward, even on the toughest days.
Now it's your turn. Take a moment to reflect on your own circle of influence. Who are the three people you spend the most time with? How do they impact your pain management and overall well-being? Are there changes you need to make to create a more supportive environment for yourself?
Remember, it's okay to make changes to your circle. It's not about cutting people out necessarily, but about consciously choosing who you allow to have the most influence on your daily life and pain management journey.
Whether you're the one experiencing chronic pain or a caregiver supporting someone else, remember that you're not alone. There's strength in numbers, and by working together, sharing experiences, and supporting each other, we can navigate the challenges of chronic pain more effectively.
So, let's commit to #Growing and nurturing those positive relationships. Let's be #mindful of how we influence others and how they influence us. Because at the end of the day, while we may not be able to completely eliminate chronic pain, with the right circle of support, we can certainly make the journey more manageable and even find moments of joy along the way.
Remember, your circle matters. Choose wisely, nurture positively, and never underestimate the power of good company in your chronic pain journey!
[1] Donald Sharpe, Lucille Rossiter, Siblings of Children With a Chronic Illness: A Meta-Analysis, Journal of Pediatric Psychology, Volume 27, Issue 8, December 2002, Pages 699–710, https://doi.org/10.1093/jpepsy/27.8.699
[2] Jaaniste, Tiina & Phipps, Elisa & Lang, Tamara & Champion, Geoffrey. (2013). Impact of pediatric chronic pain on siblings: Evidence and theory. Pediatric Pain Letter. 15. 34-37. Pediatric chronic pain is a complex health problem with far reaching effects on the whole family unit, including siblings. Having a brother or sister with a chronic pain condition renders siblings not only more likely to develop a pain condition themselves (Champion, 2013), but has also been found to have significant effects on the sibling's own functioning (Guite et al., 2007). The current article will describe the nature of the impact of chronic pain on siblings. The mechanism and theories that have been proposed to account for these associations will then be overviewed, giving consideration to both environmental and genetic influences.
https://www.researchgate.net/publication/259482425_Impact_of_pediatric_chronic_pain_on_siblings_Evidence_and_theory