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How I Manage the Mental Load of Chronic Illness

July 29, 2018

"Being positive" and "accepting one's situation" are often described as necessities for fighting the good fight when in ailing health.  But is that always realistic?  Being positive and accepting something that was never asked for?  For me, acceptance is such a weighted word.  I still don't really like to use it.  But in order to put one foot in front of the other on my worst days, I found that I really did need to engage in a dedicated approach to managing the "mental load" of chronic illness.  The mental load is a concept used to describe the responsibility of managing everything that may come along with a certain role -- motherhood is a great example, as shown here.  Although the ways in which my diseases are managed may have changed over the years, one thing has remained certain: how I handle what is thrown at me directly impacts how successfully I've been able to keep moving forward (however I may be defining, "forward," in that moment).  

 

Before experiencing worsening symptoms of Interstitial Cystitis, followed promptly by Crohn's disease, I hadn't spent much time thinking about how I managed things in my life.  I hadn't worried too much about stress, looking for the silver lining, or accepting what I had been given to take on in life.  I certainly hadn't had a reason to understand or care about mindfulness -- the approach of being "in the moment" -- and the affect that engagement in my mental strength may have on my health.  That is, until things spiraled out of control and I was left feeling panicked and unsure of my footing in my own future.  

 

I quickly started to realized that medicine and doctors were going to treat my illness, but I needed to treat "me" if I wanted to have the best outcomes.  It's been a bit of a journey to find what works for me.  To date, it's been all about how deeply I engage with things in the moment, and how I choose to frame my experiences (which means saying sometimes, that things totally suck).  What's most important in how I approach things is less about which techniques I take on, though, and mostly about the outcomes: do I feel more confident, comfortable, and in control of how things are going?  Taking the time to find what works for me, has been the biggest way to take some control back from the unpredictability and frustration of managing chronic illness.  Over the years, I've found that I like to have the following tools in my mental "toolbox." 

 

Cycle through anger, frustration, and pain -- but allow it to happen.  Realizing that these emotions are never "failures" was the first step I took to gain some footing in my emotions surrounding my symptoms and diagnosis.  When I spent my sister's 21st birthday getting sick in every bar bathroom, while strangers made pretend gagging noises and rude comments outside the stalls, I didn't feel like being positive.  I hadn't had one drink and hadn't eaten normal food in weeks, yet my body was particularly savage to me on a night when I had planned to shower my sister with fun and excitement.  I was constantly on the verge of tears and there was no "find the silver linings" talk that was going to make things better.  Framing these feelings as a "cycle" and allowing myself to experience them and then move past them has been far more helpful than simply trying to stay positive all the time.

 

Pivot, don't give up.  One thing that I had been doing without realizing it, was to "pivot" to a different activity or way of engaging with others when symptoms were bad, rather than giving up on things entirely.  Once I allowed myself to be angry and get past it, I was able to look back and see what how I had accommodated in order to survive, which was something I would begin to replicate in the future.  In the case of my sister's birthday, I offered to be the designated driver so that no one would try to encourage me to drink, and so that I could still feel like I was contributing to my sister's birthday.  I've found myself taking on these types of altered roles often when I'm unwell, finding a way to still be involved, but in a way that makes things easier for me in a less obvious way.  

 

Throw in the towel once in awhile.  Listen, I can't pretend that I'm able to pivot and get over frustrations and continue to live life as close to normal as I'd like all the time.  In those cases, when I know that I really need to, I allow myself to say "no" to tasks or events.  It's necessary to let myself be real about what I can take on.  But once I decide that I'm not able to take something on, I also need to forgive myself.  This illness is for life, I absolutely cannot survive if I punish myself for too long when I can't meet obligations that I wish that I could.  

 

Celebrate successes without permission from others to do so.  When I finally got home from my sister's birthday and poured my exhausted body into bed, I did give myself a little pat on the back.  I had survived a difficult event.  I had made it from start to finish, even though I hadn't thought that i'd be able to do it.  To this day, I make sure to give myself credit when I get through tough flights, meetings, or maybe even something as simple as getting a healthy meal into the kids at the end of a long day.  Take the time to be proud of every little thing!

 

Use personalized humor.  I'm dry, sometimes dark, and always sarcastic.  My favorite people are the ones who embrace this part of me.  For that reason, I like to make stupid, dry jokes with my close friends on bad days.  This works for me.  Finding my own brand of humor that gave me the deepest laughs is my favorite go-to on a really bad day.  

 

Talk about it, but don't talk about it.  The best way for me to explore how I'm feeling about something is to talk it through.  I like to have intimate conversations with those closest to me to get it all out there.  But then, there are days when I want to talk about ANYTHING ELSE.  I have found that a balance is best for me.  Sometimes ignoring things for a few hours and calling a friend to talk only about all the crazy things from their recent work trip -- or whatever -- is exactly what I need to take a mental vacation from what has been on my mind.  I like to swap between talking about the disease experience and not talking about it to strike the perfect balance for me.  If i'm starting to get so stuck on things that I'm losing any hope that day, I'll take a break until tomorrow.  Experiment with being more open or less open if you find that you constantly seem to be a talker or guarded -- see if it helps to switch things up from time to time.  It's all about what helps you feel more grounded. 

 

Finding a "happy place".  Meditation on it's own felt hokey at first for me, so I tried downloading some guided meditations on iTunes.  There was no need to sit in a certain position, I'd just lay on my bed with my heating pad.  At that time, I was in too much pain to go anywhere, anyway.  So why not try?  I was hooked.  Guided meditations got me through the pain of long car rides, sleepless nights, and lonely days at home alone on the couch.  When I was on an ice chip diet (8 oz allowed per day) for almost two weeks in the hospital, I would meditate to keep from eating.  Some people like it, others don't, but it's definitely worth a try.  And the best thing?  It works at almost any time in almost any place.  Just pick some of the top-rated ones on iTunes and give a listen.   

 

At times of stress, focus on what is happen right now... It can be easy to get lost in the big picture and then get overwhelmed and want to disengage.  It's important to have a road map to know where things are going, but it's also really important to be checked into what is happening in the difficult moments of an illness.  To do that without getting too bogged down is key.  I started to find myself able to engage in my in-the-moment care decisions on a deeper level when I tied them to key questions: 1. What is my healthcare goal?  (Be well enough to run tomorrow?  Get out of the hospital?  Achieve remission by the end of the year?)  2. What is my medical strategy to get there?  (Take these meds?  Follow a new meal plan?  Get more sleep?  Take time away from work?)  3. What am I doing in this moment that will be helping to get me there?  Maybe i'm overwhelmed with the concept of being on medications for the rest of my life, but my goal is remission and my current strategy is to take new meds to get there, so I'm going to just focus on meeting my goal today to help get me there.  

 

Break scary moments down into steps.  The first step?  Talk it out.  I HATED receiving meds intravenously when I was first in the hospital.  I found, though, that if I asked the nurse to confirm what medication I was taking and the reason for taking it (see the 1,2,3 steps in the paragraph above), I was able to feel in control of what was happening, even though it was something that sucked (I hated the side-effects of the medication).  After talking through the steps I would always take a deep breath and jump in feeling far more in control.  

 

Write it down.  When I was in the hospital for the first time was the first time that I learned the power of writing things down.  I wrote down a summary of each encounter with each doctor each day.  When I was tired and couldn't do it, others would fill in the information for me.  This helped me feel far more in control of the decisions that I was making about my health.  Since then, I've written down countless things to help me sift through them -- thoughts and feelings about the disease, my approach to new and scary tasks/goals, and preparation for important doctor's appointments and trips.  Writing is incredibly helpful logistically, but also incredibly cathartic.  

 

Breathing really does help... it's got to be the most annoying advice because everyone breathes...  but it really does help.  

 

Stop time and then try again.  When things are overwhelming ask everyone to leave the room, house, or space for a few minutes and force yourself to just stop time and take a break from whatever is so overwhelming at the moment.  There are very few circumstances that won't allow a person to ask for 5 minutes of peace before making a difficult decision or engaging in a difficult activity.  Sometime I still get freaked out before an injection (and I have absolutely no reason to do that), so I'll just go sit quietly in my room for a minute and stop time until I'm ready to take a deep breath and try again.  In a similar sense, sometimes simply giving a difficult task some time to get accustomed to it's impact on your life is also a real (and annoying) strategy.  In time, I came to just get used to giving myself injections every other week.  Nothing could really get me used to the process except doing it over and over again.  

 

Take on a realistic challenge.  Chronic illness, or anything that leaves a body unwell or feeling a bit broken for a period of time, can be so frustrating because of the lack of control that is had over the course of symptoms and treatment options.  It's maddening.   

                                   Docs: "What do you want?" 

                                   Me: "Control over my body!" 

                                   Docs: "When would you like that?" 

                                   Me: "Now!"

                                   Docs: "Try... 3, maybe 6 months (if and only if the med kicks in!)

                                   Me: "... shit." 

So, while waiting for some control to return to the body, I like to take on small challenges that are realistic.  For example, when in the hospital I added my own goal to the white board, it read "Jess will take a walk."  Some days, my walk was to the nurses station and back.  Other days, I went around the hospital.  No matter what, I had my own little challenge that I was in control of each day.  When recovering at home, I bought a book on a fun topic and told myself that I'd read a chapter.  Steroids made it next to impossible to read, so then I quickly adjusted my goal to make it realistic, and by the end of my medical leave -- I had finished my book!  Having no control over my body and how it functions sucks... so while I wait for that to sort out, I like to challenge myself to other little things that I can master.  Now that I'm in remission, I haven't lost this drive to take on new challenges, and it's one of the weirdly awesome things to come from this diseases experience.  It's this category that I think people are referring to when they suggest that someone take on yoga, walking, or running as a way to blow off some steam -- it really does help.  

 

Keep tabs on general health, too.  When thinking about some of the larger challenges of an illness - surgery, heavy-duty meds, or maybe a hospital stay - it's easy to forget about the importance of keeping up general health, too.  When I start to feel a little beaten down, mentally, I step back and ask myself if I've kept track of the basics: sleep, fluid, and diet.  If I'm struggling with those, it's important that I bring those needs up with my doctor.  Night sweats and insomnia made prednisone an absolute nightmare for me.  My doctor hadn't checked into my sleep, so I brought up the issue with my team when I realized how hard concentrating on simple conversations had become.  With the help of some sleeping meds, I was able to regain a little bit of control over things after just one night of improved sleep!  Don't forget about advocating for the basics. 

 

Find a tribe and never lose it.  I felt alone for a long time in my battle with chronic illness.  I didn't know anyone like me for years.  I spent far too long wondering if the little disease-specific thoughts in my head were shared by anyone else.  Once I started opening up and finding others with similar experiences (not always exactly the same -- and that's ok!), it made the tough times easier to handle.  Just last night, actually, my family sat patiently in the care on i-95 while I spent a chunk of miserable time in the rest stop.  Who did I text about it?  My buddies who would understand.  I was alone in that moment, but it didn't feel that way because I had them with me in spirit.  This is where social media is amazing - twitter, instagram, facebook, and disease-specific organizations have thousands of other people searching to expand their tribe, too!  Reach out to others!  

 

A friend of mine, Ashlee, who spent time supporting me as part of my "tribe" is now taking on a battle of her own.  I wrote this post in hopes that she might find some things useful while she engages in her own journey.  I'm sending so much love and support her way.  She deserves it.  

 

Reach out if you want to talk more about this mental load... it's a journey that shouldn't be navigated alone!  If you have things to add, please share!!!

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