Cognitive Behavioral Therapy for Chronic Pain

I attended a seminar on Cognitive Behavioral Therapy (CBT) for Chronic Pain. It was extremely enlightening and helpful in understanding additional methods to increase quality of life with chronic pain. I have been seeing more articles and information about mental health being included in the management for chronic pain but haven't had the opportunity to yet complete a deep dive on all the information I've found. This idea of how mental health can affect chronic pain was more unfamiliar to me than I would have guessed, and it wasn't until I attended this seminar that the brief amounts of information I had been reading, finally made sense to me. I actually didn't realize either that there are CBT protocols for specific issues including pain and even insomnia. 

CBT is a therapy method that I believe whole-heartedly in for a variety of areas in life from improving mental health to even helping raise children and train pets. The premise and tools of CBT are that versatile. And when I combined the understanding I gained from this chronic pain seminar with my new knowledge of how the brain works to develop everything from how we interpret interactions, emotions, moods, to our core beliefs about ourselves and the world...holy cow, did CBT for chronic pain make even more sense. 

CBT for Chronic Pain (CBT-CP) has been researched for over two decades with strong evidence for its ability to improve quality of life. Unfortunately, not a lot of medical providers are aware of this, so they don't refer their chronic pain patients to mental health counseling. But that doesn't mean a chronic pain patient is out of luck. The manual for CBT-CP is available online, at no cost, so any qualified mental health professional can access and implement it into their therapy practice. And since it's free online, anyone who wants to implement the practices into their own lives can do so too. 

The protocol is spread across 12 sessions, although this can be lengthened as indicated. The basis of CBT-CP is that there is a connection not only between thoughts, behavior, and emotions but also with chronic pain. We know that in the cognitive triad of thoughts, behavior, and emotions there can be a cycle established that reinforces each of these aspects. For example, I'm sad so I decrease my activity participation, I then feel isolated, and I start to develop depression, my depression tells me to isolate more, this makes me feel sadder and lonelier, I then feel more depressed and hopeless, etc. Introduce chronic pain into this cycle and it also becomes reinforced while reinforcing the other aspects. For example, I hurt so I'm not going to do this activity, that makes me sad, and I feel more isolated from others, I think others don't want to bother with me because I can't do this activity, I focus on my pain, that makes me more irritable and hopeless feeling, I start feeling more depressed, etc. 

CBT-CP focuses on identifying (with collaboration from the client's medical providers) an exercise and pacing routine followed by increasing cognitive coping skills. By targeting chronic pain indirectly by addressing one's thoughts, emotions, and behavior that affect pain, it will help make it easier for a person to do what they are wanting to do and thereby increase quality of life. It's important to understand that CBT-CP does not cure or fix pain nor is perfection the goal, it is a tool for increasing quality of life in the self-management of chronic pain.

This first part of exercise and pacing allows for increased activity without the pain flares we so often experience every time we start to feel better again. When I learned this, I also had an "a-ha" moment for a deeper understanding of why I had been seeing an emphasis on "pacing" in the chronic illness community for the last several years. It was, again, a term or practice I didn't really understand and hadn't researched much. I simply did activities as I was able to, often to an extreme level, and then dealt with the consequences afterwards - whatever those might or might not be. And I didn't think about it or analyze my actions and my symptoms. But this idea of pacing would be something that I would start to have more familiarity with following my gallbladder removal as I would find myself restricted to one day of increased activity without a pain flare that would last 3 days. And to help get past the one-day limit, I finally gave into attending physical therapy. But it was during this year that I would unknowingly be playing around with the concept of pacing. 

A common cycle for chronic pain patients is: I hurt so I restrict my activity and rest during my pain flare, once my pain flare subsides, I'll engage in all the activities I can that I wanted to do before that I now feel well enough to do, but then I engaged into much for my body, and I have another pain flare requiring another rest period. However, these recovery periods become longer and longer over time and the longer the recovery period, the more deconditioning our bodies go through creating a vicious cycle of increased pain and decreased activity. 

To the cognitive coping skills part of CBT-CP, think about the 5,000-6,000 thoughts a day a person has on average. How many of those thoughts do you remember from yesterday? We have so many automatic thoughts that whip through our brain and a large number of those tend to be negative, discouraging thoughts that our brain keeps hearing and those thoughts can influence our emotions and our behavior. And when chronic pain is involved...we have even more negative thoughts. Have you noticed when you focus your thoughts on pain that you're having in the moment, that the pain tends to increase? 

Pain is a subjective experience that can only be quantified by one's subjective view or rating of it up to a degree. This isn't to say at all that pain is just in our heads but that there is a difference in the body for measuring and identifying pain levels once pain starts to affect the nervous system. 

Pain is influenced not only by biological factors but also social and psychological factors. The way that we're treated by others can affect our pain level as well as how we treat ourselves psychologically and how our body responds. 

The body reacts to pain with autonomic, endocrine, and immune responses that can increase pain and activate the sympathetic nervous system - the fight or flight mode. When the sympathetic nervous system is activated, it can be measured by heart rate, galvanic skin response, muscle contraction, and EMG procedure that shows muscle response to electrical activity. 

When I'm having to wait longer in a provider's lobby, I start to think about  how long I've been sitting there and how uncomfortable the chair is and then the next thing I know, my body is aching because I've been sitting in an uncomfortable chair for a long time without feeling able to move or walk around because the more I move, the more likely I'll have to go to the bathroom and if I have to go to the bathroom before I'm called back then I worry I'll get called while I'm in the bathroom and they'll think that I'm not there so my appointment will get overlooked or delayed even longer. So, I get into this cycle of spiraling anxious thoughts and a focus on how uncomfortable my body feels trapped in this chair for an unknown length of time. 

What can one do about this to help with chronic pain? 

The cognitive work in CBT-CP is vital as a preparation for implementing behavioral changes to address chronic pain, which in turn will address the emotions we develop as a response to pain and our health conditions. It is also important to obtain medical clearance from one's medical provider for behavioral changes to be implemented and worked on in conjunction with various medical modalities as indicated, such as neurology, pain management, or physical therapy.

An integral tool for assessing progress in CBT-CP is pain measurement tools such as SUDS - Subjective Units of Distress. This identifies where one is starting in their pain level and how it's affecting their quality of life. As the sessions continue, SUDS also identifies not only progress but also what is and isn't working for the individual. There are several different pain assessment models that can be used including ones specifically for children and nonverbal individuals. 

Once the current level of pain, its impact on quality of life, multidisciplinary collaboration and goals are established, it's time to start learning and implementing CBT itself. 

Part of that is realizing that chronic pain is not acute pain. Pain tells our body to activate the fight or flight mode as a proactive, protective response. Our body isn't able to distinguish between acute and chronic pain, we must learn how to instead. The fight flight mode is appropriate when experiencing acute pain but not chronic pain. This is because during acute pain, our body is telling us to stop or get out of the situation to protect itself, it is under threat and harm. This alarm tells us to not engage in activity out of fear of causing harm. Which can occur during acute pain with increased activity, whereas with chronic pain this is usually not the case. Therefore, due to the ongoing condition of chronic pain, the pain that one experiences no longer is a reliable warning that harm is occurring. Rather than withdrawing from activity in fear of causing harm with chronic pain, it is to our benefit to engage in activity with pacing practices in place. Movement not only helps with muscle recovery but also maintaining joint maneuverability and flexibility. When I was in physical therapy to correct the deconditioning that I experienced following my gallbladder removal, there were days that I had a pain flare following the initial sessions and with new exercises. On those days, my therapist explained the importance to continue engaging in movement so that my body would better recover and maintain progress through the pain flare. To do this, I was taught recovery exercises to complete during pain flares rather than my every day strengthening exercises. 

When we over engage in activity, our pain increases requiring longer and longer recovery periods each time as our body becomes more deconditioned during each recovery period. To break this cycle, we must engage in activity in regular intervals to recondition our bodies and reduce the chronic pain cycle of crashing and burning.

The intervals for regular activity of what a person can tolerate is extremely individualized and may require a trial-and-error approach to determine where someone's limits lie. Limits can be determined by starting with intervals of activity as small as needed. An important part of this is physical exercise to recondition the body to allow for greater activities as the sessions progress.

Identifying that one has pain when doing X activity for Y amount of time. This can be determined in two ways - 

1. I do activity until I start to feel pain and I know I need to start with a shorter time interval than that 

2. I am able to do activity for this amount of time without pain, I will increase the time incrementally to determine what time interval I can tolerate.

Pacing comes into play by stopping the activity at the identified interval and allow for a recovery period. To further reduce deconditioning, pacing amounts can also be determined by pacing at 50% rather than 100%. The goal is to reach a steady pace of activity and rest to avoid pain flares, deconditioning, and increase quality of life.

Moderation is the key principle to pacing. This is a hard concept for many of us as we are used to over engaging in activity on our good days leading to us crashing and burning. We often think that it takes less time, and we can be more productive if we get everything done when we feel our best. In actuality though, this takes more time away from us and what we may be needing to do. Moderating our activity allows for more things to be done in total with less recovery periods required. 

For example, we can go full throttle for two days straight but then have a flare that requires a week recovery.  Or we could pace ourselves for the week at a certain percentage each day of activity and rest and not have a pain flare that requires an extended recovery period.

As we rebuild our bodies with exercises and engage in activities with pacing, we can monitor our ability to increase that activity time with incremental increases to the intervals between activity and rest. This is not to say pain will no longer occur, but that with moderation we can better control the balance between activity and pain so that our chronic pain is more tolerable and what we enjoy becomes our focus rather than our level of pain. 

Relaxation training becomes more integral for quality of life with the deeper understanding of how emotions and pain affect out nervous system and therefore our stress responses. As mentioned previously, stress responses can increase pain. If we reduce our stress responses, we can reduce our pain as well. Enter relaxation training. There are a multitude of relaxation practices that one may implement in addition to breathing exercises and meditations. Relaxation exercises are not cookie cutter as some are more enjoyable or more effective depending on individual preference. Therefore, it's helpful to experiment with different techniques to discover what is best suited for a person.

The next integral part for increasing quality of life, is engaging in enjoyable activities of interest. I discovered how integral this is to experiencing joy that allowed me to start living my best life. It's the things of interest that really give us quality of life and the ability to engage those things, even when it's in a modified way, we can still extract joy from the experience.

It would not be uncommon along the way of these sessions to encounter cognitive resistance. As discussed earlier, throughout life and in reaction to everyday life experiences, we train our brains to think in certain ways. Unfortunately, we don't always train our thoughts to be the most helpful. Learning and identifying the distorted thoughts we use to view the world with allows for starting to change those negative thought patterns. There are 13 common distortion patterns that we are all guilty of using at some point or another. These include:

• filtering out the positives so that we aren't even aware of them
• discounting positives so they don't even matter
• polarizing thoughts to it's all or nothing, black or white, there is nothing in between
• overgeneralizing one thing and applying it to everything in a never-ending situation
• jumping to conclusions or mind-reading without actually knowing the real situation
• catastrophizing every situation to the worst possible situation, regardless of likelihood
• personalizing things that have transpired as having occurred solely because of ourselves
• fallacies that you have all the control or none of the control in a situation, measuring behavior or situation based off how fair they feel to us and believing that others should change to suit what we want
• blaming others for our feelings
• shoulding ourselves or others to what we expect without allowing for exceptions
• emotionally reasoning that because we feel a certain way about something, that must be a fact
• labeling or mislabeling ourselves or others with judgement and without considering context
• believing we're always right despite evidence and the feelings of others

As we become more familiar with when we're engaging in cognitive distortions, the more we will become aware of them and be able to catch them so that we can change them. My favorite way to change thought patterns is using cognitive reframing or restructuring to challenge the thought and replacement with a slightly updated new thought. 

Cognitive reframing isn't changing a thought completely; it's simply tweaking it. When we whole-heartedly believe a thought to be fact, we're going to have resistance to the idea and attempt to completely change that thought to the opposite. Instead, if we complete a simple, small tweak, we will be more successful and over time, with repeated use, that thought pattern will change.

Let's use the thought that "I can't do any activity without having a pain flare!". Breaking that thought down and earnestly looking for what activities do I do that haven't caused a pain flare, no matter how small of an activity it is. It doesn't have to be activities we enjoy even. Simply tweaking the thought from an all or nothing thought to allow for the positive - "I still have pain flares, but I have been able to do X without a flare". 

Challenging questions for that thought could include what small things am I able to do without a pain flare? (Sitting up, drinking water, however small it needs to be). When something is painful to do, how long does the pain last? Does it last the same amount for every single activity I do? Are some things less painful to do or require less recovery time? 

As we challenge thoughts and find exceptions to the thoughts, the more we give back to ourselves, the more grace we allow, and the better we become at seeing the exceptions. In turn, our behaviors change and in turn, our mood. When we feel less hopeless, defeated, even angry about something the more motivated we become and likely to do things and focus on things in life that add to our quality of life. 

Not only does changing negative thought patterns improve mental health and reduce painful emotions that trigger our sympathetic nervous system, but it also increases our coping ability with pain. 

The last piece in CBT-CP is to look at the pain and sleep interaction. Sleep is necessary for body recovery physically and emotionally. Poor sleep can increase our sensitivity to pain. Therefore, practicing good sleep hygiene and even participating in CBT for insomnia can affect pain levels.

Good sleep hygiene includes:

• only going to bed when sleep, not just tired or fatigued
• using one's bed only for sleep and sex
• if unable to sleep after 20 minutes, get out of bed and only return to bed when sleepy
• awakening at the same time every day and going to bed at the same time each night
• avoiding naps during the day
• keeping the bedroom dark, quiet, and comfortable for sleeping
• limiting caffeine intake after 2 pm
• limiting food intake for 3 hours prior to going to bed

Learning how to implement each of these parts in my life has significantly increased my quality of life and how I manage my chronic pain. It took me about a year to find and maintain an effective self-care practice of exercise, pacing, and activity for what works for me. There are times I slip back into old habits, and I have to catch myself so that I can correct. I hope that with time and practice, you'll start seeing changes soon as well.

Caregiving for Mom - The Last Years

Jenny, Mama, and Daddy

The conceptions we create of our parents over time as we grow from children to adults can be quite interesting to say the least. We come to learn new details about our parents that challenge those long held perspectives we've built, leading us to see our parents in a brand-new light.

This has been my experience with my mother and my understanding of her has a strong patient advocate. I grew up not only believing but knowing my mother to be a fierce advocate for me. I learned how to be a patient advocate for myself and others by mom's example, seeing how hard she advocated for me over the years into my adulthood even. Naturally, I presumed that my mom was just as strong of an advocate for herself as she always had been for me. And perhaps she always was. I know she was with insurance companies a fierce advocate for all three of us. But outside of the home, I wasn't there to witness her self-advocacy most of the time.

I started this article months before we lost my mom. When I re-read it to try to finish it soon after losing mom, I felt like I had been so unfair to mom about her level of self-advocacy. The day before she was hospitalized, I had even told mom, "I wish you took your health serious" in frustration when mom and dad told me that neither one of them had yet to call her Urologist two weeks after her ER trip for UTI. Mom replied "Whatever" in disgust. That's all the energy she had to spend on it. I apologized to her the next day when I saw her. She told me it was okay. I'm so glad I made sure to apologize to her.

In spite of mom's multiple health conditions that caused pain and limited her absorption, she was holding her own remarkably well until 2023 when her symptoms appeared to be out of control to me - her blood sugars wildly high with extreme lows, her mental capacity affected by relentless fatigue, ongoing urinary infections, and chronic pain. As an adult, I never shied away from sharing my medical knowledge with my mom for helping her to receive the best medical care and resources available. But I didn't interfere or assist with her medical care until 2023. I didn't know she actually needed me to but as I began to discover the magnitude of her worsening symptoms, the more I realized my conception of my mom as a strong patient advocate in a large part seemed to only be applied to her advocacy regarding my care - she wasn't using her advocacy skills for herself, and she had all kinds of understandable reasons to why that was. What I discovered through it all, was I don't think mom knew the right questions to ask and she became so overwhelmed with multiple medical appointments every week and her body was becoming increasingly tired, weak, and painful that the frustration of it all led to a bit of indifference at times that I don't think necessarily was there in years prior. 

We agreed that I'd take an active role in her medical care going forward, acting as her liaison between her and her doctors, assisting with arranging care and going to appointments with her as needed. By the one-year mark of my active role in her caregiving, she was in a lot of ways in a better place physically than she was before I took over her care. I still grapple though with trying to understand how my mom allowed herself to get into some of the situations I found her to be in because she didn't advocate for herself when she fiercely, unashamedly advocated for me even when I hadn't asked her to and especially when I told her not to, and she still did. 

With my assistance, we changed some of her providers to ones I trust. I have a long-held mistrust of medical providers on the count of my medical trauma as a child, so when I trust a provider, it means a lot. This included changing her Rheumatologist and Endocrinologist. Over the last year of her life, she was diagnosed with Rheumatoid Arthritis and was in the process of being scheduled for an infusion to reduce her high inflammation markers. She continued to have chronic urinary infections that her Nephrologist believed resulted in a bacteria colonization of her bladder and had become drug resistant. In addition to the Nephrologist, she was also followed by a Urologist who aided with managing her urinary infections. We were receiving the guidance of a Diabetic Registered Dietitian who worked in conjunction with her new Endocrinologist for her Diabetes. She also was receiving treatments from a nerve renewal clinic for her Neuropathy that had improved her mobility and balance. 

I'm fortunate that dad remains in pretty good health and together, we were able to coordinate care for mom. As someone with a multitude of chronic health conditions myself, I honestly don't know how others manage their own health and that of their loved one without help especially if the caregiver is still working. I know it was a lot at times even for dad to leave the house to run errands or complete other necessary business due to fear of leaving mom alone. A fear that was understandable and dependent upon not just the day but the hour. It worked well for us that dad was able to attend and take her to her appointments and I focused more on the communication with providers and coordinating care as I have a deeper understanding of the behind the scenes and medical details. This knowledge, sometimes an annoyance to my parents, helped them better understand the gravity at times that mom was facing and led me to have some quite frank, heart to heart conversations with my parents. 

Understandably, mom became tired of having so many doctors to see and taking so many medications. She had quite a lot more to cope with than myself. Yet, at times I struggled with her resistance when she told me she didn't want to pursue an evaluation or treatment because she didn't want to have another appointment or another medication or nutritional supplement. I struggled with my patience and empathy at these times as I was transported back in time to my high school years when I wasn't given a choice and in efforts to quite literally keep me alive, I was forced to endure repeatedly painful procedures and follow strict, absolutely dreadful protocols. Mom struggled with a poor appetite and unintentional weight loss from her malabsorption issues from multiple disorders (and as I feared, also Failure to Thrive). I often wanted to scream "I'm just trying to keep you alive!". The nutritional supplement options from 20+ years ago are significantly better in not only options available but also in taste. As a teenager I was forced to ingest foods that made me gag from the taste and odor of them but nowadays, there are protein bars that taste just like candy bars and protein drinks that taste like milkshakes. 

It was in these moments that I had to pause. Patients often feel smothered, controlled, and burdensome in regard to their caregivers and caregivers often feel overwhelmed and consumed by their concern for their loved ones. These feelings though are frequently miscommunicated in ways that hurt the patient-caregiver relationship leading to feelings of resentment. Keeping this in mind, I paused. Arguing is not helpful. Clear communication of feelings and knowledge as to why XYZ is being asked of the patient and why ABC is being resisted by the patient is helpful to come to an understanding of one another and the root issue. It's at these times that I set my parents down for a heart to heart. 

Fortunately, mom responded well to these heart to hearts and they left her with increased motivation, and we were able to devise a plan for how to still pursue an evaluation with possible treatment but closer to my mother's terms. For example, when she told me that she didn’t know if she still wanted to pursue a Hematology referral we compromised on, make the appointment as the Hematologist doesn't likely have any new patient openings for anytime soon and if it's still earlier than you'd like, schedule it further out.

While her symptoms did significantly improve after I started helping in her caregiving, the last 8ish months of her life, her health rapidly declined to the point that I knew if things continued the way they were, she wouldn't survive another year. One of my worst nightmares is losing my parents and is something I've been fervently working to process and heal from in therapy since 2022. Thankfully for my own well-being, I stopped running from the pain of processing my trauma that solidified an unhealthy attachment to my parents. I'm not sure how I'd be able to cope with the events that have been transpiring if it weren't for the intense trauma therapy I continue to receive.

In my opinion, there were 2-3 main areas of focus for decreasing mom's symptoms to allow her a better quality of life and an extension: managing her liver disease, Rheumatoid Arthritis, and urinary infections. 

We made a lot of progress alone in her liver disease by the success of her Advanced Endoscopist (two weeks before her passing) to finally and fully remove a large bile duct polyp that significantly contributed to the development of liver disease. The location of this polyp was only allowing our GI specialist to trim the polyp every 3 months in an ERCP. As the polyp grew, her symptoms worsened and each ERCP was hard on mom requiring additional recovery period. While the Advanced Endoscopist was successful in fully removing this large polyp, another polyp was discovered further up in the bile duct but was scheduled to be tackled in her next ERCP. 

She was diagnosed with Emphysematous Cystitis (EC) just two weeks before she died. EC is a UTI with a gas producing bacteria. This was particularly concerning for me as the mortality rate for EC is reported to be 7% and if not caught early, increases to 20%. This wasn't what ended up killing her though.

Combining this knowledge with my trauma attachment, was devastating for me. However, I coped much better than I would have before I started my intense healing journey in 2022. While I was fearful and anxious, I was able to navigate it with greater ease than in the past and came away from that experience with the realization that I needed to remain alive for mom to receive the care she needed, especially if her health was going to continue to decline. And most importantly, I was okay with being alive for her until her passing. This alone is an incredible display of growth on my part as I've had the long-held wish that I should die before my parents out of fear of how I would even possibly be able to cope and live without them. Through my therapy and before losing mom, I reached a place I knew I could not only envision life without my parents, as difficult as it would be, but I knew that I would be able to manage. While my life wouldn't be the same without my parents, I believed I would be able to find a way with the support of my people, to live and not merely survive. I still do not want to live without my parents, but I was able to trust that I would be able to live and accept the need to be alive for my parents' well-being during their final years. Now don't get me wrong, I still hoped we all three would have died together as my parents and I have often joked about in some natural disaster - this remains my ideal. 

Dad and I never imagined though that we would lose her so soon. I tried to prepare dad for thinking ahead because of mom's rapidly declining health. I was afraid she would require a 24/7 private caregiver or nursing home placement before long. After she was treated for the EC, she had an incredible 1.5 weeks for her. She went out and did things, went to many medical appointments and was able to go do the things she wanted as long as dad drove her and helped her walk into places. And then on that Wednesday, she started feeling worse. Thursday, she cancelled her medical appointment that day. Friday she couldn't move without dad's help, she was hardly eating or drinking anything. She refused to go to the hospital. Dad never pushed mom to do anything medically she didn't want to do. She didn't seem to take it well from dad. Whereas, with me, she did. 

I came over on that Saturday morning and dad asked me to try to convince mom to go to the hospital, to the main location, and by ambulance. Mom was curled up on the couch, she probably weighed under 100 pounds at this point if it wasn't for the loose skin of her apron belly from her abdominal surgeries. She couldn't move any amount without increased pain and of course remaining still didn't alleviate her pain either. She couldn't walk by herself; she couldn't pick up her legs onto the couch herself. She couldn't really do anything by herself. Amazingly though she was able to clearly remember her medications and when to take them. Liquid dribbled out of her mouth when she tried to drink from a straw - more than I had ever seen. She could barely talk. She had difficulty enunciating and while she could kind of say sentences, they had to be short, but the words were hard to understand. These two things alone were new, alarming developments.  

When talking to mom about needing to go to the hospital, her response was "what are they going to do? Give me fluids and antibiotics?". She was exasperated and I could tell she didn't think the hospital was going to do anything more than fluids and antibiotics so what a waste. I just thought "No, mom. They're going to do so much more." I explained to her that she couldn't live much longer like she had been the last two days, she wouldn't make it through the weekend if she didn't go to the hospital. I convinced her to go by ambulance to the hospital we knew she needed to go to for the best care, where most of our doctors are. 

I had access to mom's patient portal so every time she had any test done even in the ER, I could view the results long before the ER nurses or even the doctor came to tell us. From the lab results and when the ER doctor was finally able to see us all in person, he asked the nurses why she was still there in ER in an urgent questioning manner and when he said, "She should be in ICU", I knew we were way deeper in it than any of us had realized. We never would have guessed that mom was in septic shock, her life was second to second. The ER doctor wouldn't let mom make any decisions, he said she was cognitively impaired from the sepsis. We went against mom's wishes and made her a DNR for that day and night. And through all of this, mom had some of the best hearing she had in years and would remember things being said around her and then later on ask for clarification about what we were talking about. We were astounded. But that was mom. She was always leaving us astounded and she continued to the rest of her life up until her final breath. She was alive long after she medically, scientifically should have died. She became lucid enough in the midst of everything that while I was making the medical decisions for her, I felt she was lucid enough to be involved in her care and to know what was going on, no matter how harsh the truth was. And that's how mom wanted it - she wanted to be involved in her own care and she didn't want anything kept secret from her. She furrowed her brows I was told when I would talk quietly to any hospital employee and especially if I stepped out of the room to talk to them. And she would relax and appear relieved and peaceful when I would come back and tell her what had been discussed. She even asked me that second day in the hospital, "You wouldn't lie to me, would you?" No mama. Never. She hated it when I told her we didn't know things, she was afraid that I was hiding the severity of things from her. I just didn't know because I couldn't tell the future - I knew the current risks but I didn't know what was for sure going to happen until the day I had to tell her that we were putting her on hospice. That was when we knew there was no more hope of saving her. The only thing left I could do as a caregiver was make her last days as comfortable and full of love as I possibly could. And I did just that with the help of my dad and mother-in-law. She died with me and dad by her side. Her ever-faithful daughter never leaving the hospice facility and rarely leaving her room while her ever faithful husband took care of their home and her pets for her when he wasn't at the hospice facility.

Mom had an affinity for dragonflies the last few years of her life, she liked that they're called Skeeter Hawks. As we left the hospice facility to return to our own homes respectively after saying our final goodbyes to mom's physical body - a dragonfly was caught in the grill of mom's car. I asked dad what he thought it meant.

"I caught her". 

Watch Sharing Mama's Story for a detailed account of mom's last weeks alive, including our time at the hospice facility together. 

Meditation Effects on the Brain

I attended a seminar through the Institute for Natural Resources titled Meditation and the Brain: Physiologic Effects, Mindfulness, and Mental Health. It was very enlightening learning about various methods of meditation and their effects on the brain that I will share with you below. 

How We Can Use Hardship to Build Our Resiliency

Most of us are aware of the popular saying that “what doesn’t kill you makes you stronger”, which was shortened from the original saying penned by philosopher Friedrich Nietzsche. Nietzsche, who is a fascinating philosopher to study, argued that while life’s suffering provides an opportunity for growth and building strength, the ability to build strength from suffering comes from existing strength within someone. This is a view that has been told and retold throughout written history before and after Nietzsche.

This all aligns perfectly with a renewed outlook on the saying “what doesn’t kill you makes you stronger”. Perhaps you have seen this new perspective tweeted by @rkkaay that has been shared around the internet:  

“Your trauma made you stronger. No, my trauma made me traumatized, it made me weak, gave me sleepless nights and memory loss, it gave me feelings I’ve never wanted. I made myself stronger, by dragging myself out of a dark place and dealing with consequences that weren’t my fault”.  

I absolutely love both perspectives of how hardship and trauma provide an opportunity for building strength. It is ultimately, within us where the true strength lies and is activated by trauma. The trauma is merely a trigger signaling to us to build from the trauma experience. By viewing life's hardships in this manner, the power is restored to the individual. It is not the trauma that holds power over us, it is we who holds power over the trauma. This is an incredibly vital understanding for processing trauma, particularly if the trauma has led to Post-Traumatic Stress Disorder (PTSD).

As a rare disease patient whose medical experiences led to the development of medical PTSD, I realize firsthand how powerless and helpless PTSD can leave one feeling, especially when combined with depression. It can become completely crippling to one's efforts to participate in normal daily functioning.

Not only can recognizing that the ability to grow and build from trauma lies within oneself instead of externally be life-changing by itself but also identifying and acknowledging where the growth shows itself in one's life as well. When we build from our inner strength through hardships, there are common perspectives or understandings that many of us adopt or learn. These new understandings are quite powerful in themselves as well.

Empathy Not Sympathy

It can be difficult at times to empathize with others and their experiences when we don't have any experiences to help us relate to another's. Many confuse empathy with sympathy; however, they are drastically different. Sympathy is a feeling of pity for another and their experience, it stems from a desire for us to not have the same bothersome experience of someone else's with a motive to not feel the discomfort that thinking of another's experience triggers within us. Whereas empathy is compassion for another's hardship with relation and understanding of their experience without any underlying motive about our own feelings but rather a focus on their feelings. When we experience a trauma, it broadens the realm of life experiences we encounter and by doing so, it allows us to build our empathy for others and their hardships. While one hardship may not be exactly the same to another person's hardship, our ability to relate progresses and based off our experiences we can find compassion for that of another's even when they are on the surface very different. When we relate to one another on a deeper level, we can provide and receive support from one another - strengthening our social connections. And strong social support in turn increases our resiliency to hardship.

Community Building

This is why community is so important for one's well-being. Often times, especially for men, the notion of being completely independent to the point of not allowing any help or support from another person whether it's physical, emotional, mental, or financial becomes romanticized and striven for by many. However, in reality, such extreme independence can negatively affect one's mental health as it leaves one vulnerable to feelings of shame, guilt, worthlessness when support is required. When these conflicting beliefs and feelings are not resolved, the dissonance can lead to new hardships created by a maladaptive attempt to stop the contention resulting in chemical dependency or substance abuse, for example. We see this struggle between what one believes they should be as a hyper independent person and the reality of requiring some type of support most often among men and individuals in careers that emit or require a presentation of unusual strength physically and mentally, for example military and law enforcement. These are also fields that provide unique experiences that the general population is not subjected to in most cases. For these reasons, community building of those with similar experiences becomes even more crucial and when psychological conditions and maladaptive behaviors occur that require a higher level of intervention and such communities can be very helpful.

I've experienced the need for such a specific type of community in my own medical experiences as a child and teenager with an ostomy and as a rare disease patient. Attending The Youth Rally and UOAA conferences were life changing in their own rights for me as an ostomate - I was able to meet and develop lifelong friendships with others of my own age who also had ostomies. And through the online rare disease community, I finally found the connections I so desperately needed as a child who didn't know anyone else outside of my family with my rare diseases.

I learned over the last two years in my metaphysical classes that receptivity to the support of another is not just about us receiving from one another, but it is also about the other person who is wanting to give. By receiving their support, we are giving them that opportunity to give, to grow themselves, to increase our social bonds to one another. As a giver, it can be difficult to receive from others and I try to remember this now when someone is wanting to give to me.

Self-Care

As I finally learned self-care in 2022 and after many trial and error attempts, I've learned how to also maintain self-care now, I have a new appreciation and understanding of self-care. Self-care is difficult to learn or achieve when we are in a survival mode but eventually, our minds and bodies will force us to learn self-care if we want to improve our mental and physical health. This is another difficult task for a giver which can be bred through hardship as well. My own medical trauma led me to want to give to others to help them through theirs and so I often gave more of myself than I had to give and once I stopped living in survival mode, my mind and body let me know it was time to learn self-care. Part of self-care is managing our energy and health needs to protect ourselves from burning out or causing more harm to ourselves. Like any habit we want to create, we can start small and build upon that starting point. We won't learn self-care in one fell swoop, it's a learning process just like the rest of life.

Building Appreciation

A common negative thought pattern that we all practice at times is discounting the positive and focusing on the negative. We do this also when we practice all or nothing thinking, black and white thinking. Both of these cognitive distortions make it difficult to appreciate the good, the positive in experiences and in life in general. An attribute of resiliency is the ability to practice appreciation and gratitude. Some days this may be harder than others but at the end of the day, being able to step back and find something to be grateful for even on the hardest of days can make the difference in reducing the hold of depression. This is not to say that positive thinking or gratitude are a cure all for depression, but they are healthy coping mechanisms that can be employed during hardships to help us decrease the mental toll of a difficult time. When experiencing a chronic hardship, such as with chronic illness, a person has two paths they can choose to take - either it can become so difficult to appreciate the good moments because one is so bogged down by the fear of the next let down OR the good moments can be savored and reflected upon with fondness and deep appreciation. Personally, I find great joy in relishing the good moments, savoring them and appreciating them in all their glory. When we have chronic pain and we do an activity without resulting in a pain flare, that's something to appreciate. When our doctor's appointment or test results are good or better than we anticipated, that's something to appreciate. When we remembered all of our medications without missing any of them, that's something to appreciate. The beauty of appreciation is that appreciation doesn't have to be for something huge - it can be for literally anything. And when we find moments of gratitude, we are building up our inner strength.

Gaining New Perspectives

As we develop each of the previously discussed skills and healthy coping mechanisms, we can begin to gain a new perspective, a wider perspective. When we feel pinned down by a difficult time, our view of the situation at hand can quickly become hyper focused and narrowed creating tunnel vision. Negative thought patterns will arise during tunnel vision as well and depending on the narrowed view we are taking, we may become overwhelmed by feelings of hopelessness, stress, defeat, fear, anxiety, etc. When we notice such moments, it is important to engage in behaviors to help widen our view once again and looking at the situation from a different viewpoint. In the midst of a crisis, or what even feels like a crisis, this can be challenging. Taking a moment to pause, to avoid rumination, regroup with the larger picture in mind and consulting with others are all small steps that can drastically change one's view on a difficult situation. For example, when my last surgeon said that there wasn't anything else for him to do about my chronic, debilitating pain that developed 2.5 weeks after my gallbladder removal, I was overcome with a brief period of depression and utter devastation. After I cried my heart out for hours and probably took a nap from exhaustion, I awoke with a new perspective on my pain and was able to devise a new plan of action for finding out what was causing my pain and for any possible effective treatments. It was with this wider view of the big picture that I was able to draw upon my inner strength to carry me through the next 6.5 months that it would take to obtain a diagnosis and effective treatment plan.

I struggle with catastrophizing potential future events, fixating on the worst-case scenario I can possibly imagine. This is a cognitive distortion that I continue to work on in my EMDR therapy and stems from my medical PTSD. I am becoming better equipped to identify when I am catastrophizing potential future events and exploring a new perspective of moderation, reducing my all or nothing thinking in regard to my fears. The more that I am able to practice this, the more I am gaining a new perspective on life, my future, and how I can cope in healthier ways.

Ultimately, we get to choose how we are going to respond to hardships in life. Responding and reacting are two different things. Reaction is that knee jerk reaction without any thought involved, however, responding is when we take the time to decide how we want to respond instead of automatically going with our initial gut reflex. Learning how to respond is part of healing and building upon the strength within ourselves that can be shown to us through difficult times. For even appreciation can be given to a hardship for the opportunity it provides to grow, for revealing what may not have been visible to us previously. Until that time, when facing a difficult moment and awaiting to come out on the other side of it, we can engage in daily practices to keep us above water while we are navigating those periods. 

3 Self-Care Habits That Can Be Started Today

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Self-care is one of the most important things we can do for ourselves and yet it is one of the most frequently neglected aspects by many of us. The practice of self-care is not just for mental health either, it is also for physical health as it's vital for helping to reduce health risks of stress, burn out, over working, sleep deprivation, poor diet and hydration and more. The beauty of self-care is that there is no right or wrong answer and there's a vast number of things that self-care practices can include, it's highly personalized for what works best for someone. There are, of course, a few main stays for overall well-being that are universal to meet our bodies basic needs that are often neglected as well. Below are 3 self-care habits that can aid in meeting 3 different levels of needs in Maslow's Hierarchy of Needs that he identified to be drivers for behavior and what makes us fulfilled.

A vital aspect of self-care that seems often difficult for many to achieve is adequate sleep. This is a basic need and is included the first level of physiological needs in the hierarchy. Without adequate sleep, the body and mind can become dangerously taxed to the point of serious illness. Developing good sleep hygiene is one of the best ways to improve one's sleep, particularly without resorting to medication. The CDC provides tips for improving sleep hygiene and provides information for connecting with the American Academy of Sleep Medication for more in-depth sleep education. 

Social needs are another need identified by Maslow on the 3rd level of love and belonging where connection and secure relationships with others is identified. Staying connected to others can be difficult when living with a chronic illness and far too frequently, depression in addition. With chronic illness, we often feel like a burden on others and don't want to ask for "even more" from our friends and family. However, this increases isolation, which in turn, increases risk for depression. With depression, the brain tells us not to do things, such as connecting with others, we have negative thoughts about our relationships with others and our needs, and depression is further reinforced. And so goes the cycle on repeat until something in the chain is broken. One way to help with breaking that behavior chain is to stay connected. Socialization has many additional benefits for physical health in addition beyond just mental health well-being and is easier to do now than it likely ever has been before with a variety of avenues thanks to technological advancements. 

Esteem needs are placed on the 4th level by Maslow where one earns esteem through self-worth, competence, independence, and dignity from within oneself and the respect or acknowledgement one desires from others. Achieving a true level of esteem, fully loving oneself in a healthy way, is not based upon physical appearance, possessions, or the opinions of others but rather how we value, love, and accept ourselves. How we view ourselves can affect our self-esteem and this can even be affected by the care we take in our personal appearance whether it's clothing, basic hygiene or more. When we engage in behaviors that help us feel like ourselves even when we may physically or emotionally not feel at our best, such behaviors can actually help to release dopamine and lift our moods. Unfortunately, chronic illness can negatively impact more than not feeling well physically or emotionally but also every aspect of the body, including causing damage to one's teeth. This has been a major concern I have with my esophageal dysmotility, especially when I was having chronic vomiting as not only does malnutrition impact teeth but so does vomiting. Being able to obtain dental guidance and treatments necessary to prevent or repair the damages of chronic illness is not necessarily easy though either due to expense affecting access to care. Similarly, to how there are vision centers that provide promotions and discounts, some dental centers do as well, such as this dentist in Florida. When I was married, before my then husband had dental insurance, we took advantage of similar promotions to at least be able to afford to obtain a cleaning and exam for him. Dental wise, there are also dental schools and free or low-income dental clinics that offer various dental services to aid with process of obtaining the dental care a person may require for good dental health. 

Whatever new for your self-care habit you're planning to start on, remember to specify realistic steps for achieving your goal and identify how you will know that you've achieved the steps and ultimately the goal of self-care. Doing so helps set us up for success when goal setting and part of self-care is also giving grace for setbacks so that we may stay motivated to continue our efforts. 

Changing Our Perspectives to Better Our Well-Being

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Living with chronic illness can easily lead to feeling like life has become mundane, perpetual routine of medical appointments, treatments, and feeling generally stuck in a rut. If we aren’t careful, we can spiral into depression that further negatively impacts our health and well-being.  

While we are not always able to change life's situations, we do still have control of our thoughts and actions which ultimately impacts our perspective on life and our well-being as well. Below are some ways to aid with just that – changing perspectives to better our well-being. 

Prioritize Self-Care 

I’ve previously shared about my own journey of learning what I needed for self-care and how to maintain it. I had been stuck in a survival mode for decades between my own physical and mental health – I didn’t have the chance to properly learn even what self-care meant or looked like. Self-care looks different for everyone – it truly is a highly personalized practice. At a self-connection retreat, I attended in 2022, I learned many different self-care rituals that I had never thought of before. I absolutely loved the retreat; it was refreshing to my worn-down spirit and gave me new ideas for how I can care for myself. When we are in the depths of chronic illness, we can so easily forget that at times the basic necessities for our well-being are truly just that – necessities. Eating healthy, exercise, and sleep are vital for our bodies and mind for the bare minimum of functioning. Without adequate, balanced nutrition and sleep, our bodies will struggle to function – we need adequate calories just for daily survival, proper nutrients to maintain our electrolyte balance, and sleep for our body to repair itself. Without these keys, our immunity lowers, and our chronic illnesses can worsen. Exercise, of any kind for any amount of time, aids physical and mental health as well. Chronic illness can make exercise difficult for many of us. However, some is always better than none. For some, stretching may be the best and most appropriate form of exercise while others are able to perform more rigorous exercise such as running. The key is to keep our bodies moving as without movement, our muscles atrophy and are less able to support our bodies and pain can worsen significantly. 

In the midst of surviving and managing all that comes with chronic illness, remember you are important and you deserve self-care.

Reconsidering Work Options

Not everyone with chronic illness is able to work and some may find it difficult to continue in their current career field. For example, I absolutely loved working hospice, however, my body is unable to tolerate the stress of traveling all day long, every workday. I need a job with minimal travel. I had to reconsider what I wanted to do and what my body could tolerate because of this.  

Sometimes though, when faced with chronic illness our passions and expertise change. That’s why I started my rare disease advocacy with Life’s a Polyp, which has opened advocacy opportunities I never imagined or expected. For others, it may be a complete career change though. For example, a friend of mine decided she wanted to add to her own personal medical experience and expertise by becoming a nurse to help others with her same conditions. What an incredible way to apply one’s own learned expertise to be able to apply it daily to others going through the same experiences! For those with the same passion, travel nursing can be an opportunity to afford one not only the chance to help others but also allow for seeing the world, which may not have been possible previously due to financial constraints often experienced with chronic illness.  

Finding Balance 

Balance is a key part to self-care, something we often forget. Often times, we will dedicate the majority of our time to other pursuits – whether it’s work or simply daily survival. Either way, when our focus and activities do not allow for self-care, we are at risk of burning out, we become more exhausted physically and mentally. In learning what self-care meant for me, I had to learn what boundaries I needed and how to maintain those boundaries. Part of that was establishing a better work-life balance. I know that I need two days off in a row from work and I started taking at least one day off every month for myself and taking at least two weeks of vacation each year. At home, I set boundaries for my activities on the weekends to allow a continued activity-rest balance. Knowing our limits and learning to say no without feeling guilty helps us to preserve the energy that we need for self-care and recovery. That way, we can continue on. 

Establishing New Friendships 

Friendships and community make a world of difference, especially when it comes to rare diseases. I felt completely isolated and lost growing up not having access to community with others outside of my family with my rare diseases. I’ve found also that it can be hard to make new friends as an adult, being out of school and even making friends outside of work – where, let’s face it, most of us spend our time if we’re able to work. Thinking outside of the box of different ways to meet new people can be helpful in building new friendships to help us decrease isolation, grow our support network, and ultimately, also add to our self-care. Sometimes it can be difficult to let others in, we often guard ourselves due to our chronic illness in fear of rejection or lack of understanding from others – but leaving our comfort zone can absolutely be worthwhile and rewarding in ways we previously hadn’t imagined.

 

Living with chronic illness isn’t easy by any means, but we also don’t have to be fully consumed by it. Sometimes, we just need to think outside the box to change our perspective and allow new opportunities for self-fulfillment to occur so that we may shift from surviving to thriving with chronic illness.