What Can We Control When We Have a Chronic Illness?

Here’s how I see it: in my life there are things that are out of my control. No matter what I do, I cannot change them. And then there are things in my life that are totally within my control, and I do what I can to change them. Seems pretty simple, right? Well, yes and no. There is this concept in psychology called ‘locus of control’ that has been vigorously studied. It basically describes how people make sense of different influences on their life. There are two types of locus of control. The first is internal, in which we believe what happens to us is caused by our own actions. The second is external, in which we believe that what happens to us is caused by outside forces. Would you believe that having a high internal locus of control is helpful? Especially for those of us with chronic illness or pain? Well, that’s what the research says…

There have been a ton of studies showing that people with high internal locus of control tend to have better health habits overall, are more likely to be screened and tested for health conditions, and actually have better mental health after being diagnosed with an illness. Janowski et al. (2013) found this was the case across chronic health conditions in their study. According to a study by Brown et al. (2018), people with high external locus of control have a lower quality of life, in their study on cancer patients. The great thing is, this is information we can utilize to make our lives better with our chronic illnesses. But how, you might ask?

I want you to take a moment and ask these questions to yourself. What do I have most control over in my life? What do I have the least control over?
We often focus on things that are not in our control, such as the behaviour of others, actually getting an illness, and our difficult thoughts and feelings that are associated with all of this (and are an important part of being human). When we focus on these things we end up feeling helpless, hopeless, angry, anxious, guilty, sad, and so on (the struggle switch). We get stuck on these stories of “if I wasn’t sick my life would be good” or “my life will be great when I’m not in pain anymore, and will be miserable until that day comes.” This is common when you have an illness or a severe injury (like a concussion for example). The problem is, we don’t know if or when we will ever be without our illness or pain or injury, etc.

I didn’t have control over getting sick, nor can I stop my thoughts and feelings from occurring (they’re part of being human).

What we can do instead is start focusing our time and energy on what is in our control, such as our actions/behaviours/whatever you want to call it. Self-empowerment is one of those now almost silly terms that was hijacked by the self-help life coach world, but essentially, having a high internal locus of control and then taking control of what we can is the epitome of self-empowerment. The better health behaviours we have = the better quality of life we have (even with illness and pain).

What can we do to take control?

  • Unhook from our difficult thoughts and feelings – try this or this.
  • Connect with our values to determine how we want to act even with the challenges that we face – listen to this.
  • Take action, behaving like the sort of person we want to be, so that we can live the sort of life we want to live – listen to this.
I can take control over my actions and lead a values-based life.

If you currently have a high external locus of control and a low internal one, this switch might be difficult to do. You may need the extra support of a psychotherapist/counsellor, and you will definitely want to give yourself patience, time, and kindness. We all have the opportunity to live a great life, regardless of our health status, so let’s see if this helps us make the most of it!

How I Use Pacing to Make the Most of My Day

When I moved across the province at the end of October, I did NOT do a good job pacing myself. Granted I had help for the physical moving but not the packing or unpacking or the putting together of furniture – that was all on me. I started out with the best intentions. I actually started packing by pacing. It was more the last minute stuff, the physically carrying items in the truck, and then everything after that was a disaster. And of course, that caused a flare (luckily it only lasted a week or so). However, that’s not what I normally do. Normally I pace myself, which is part of the reason why I can consistently be as active as I am.

Definitely explored my new neighbourhood as soon as I could.

What is pacing? Pacing is doing the same amount of activity everyday – whether it’s a “good” day or “bad” day. Now, this doesn’t mean you’re not listening to your body. There are of course days that Chronic Illness Warriors are going to need more rest. What it does mean is not over-exerting yourself on the good days and therefore creating more bad days. For example, I go for a walk everyday. It’s about an hour long. Even on days where I feel a bit more tired, I get my walk in. I also try to do some yin yoga everyday. It’s definitely movement that is easy to get in on days I don’t feel as good, because it is slower movements and stretching. But let’s say that I didn’t go for a walk today. Maybe I cleaned the house and did laundry instead. It’s about the same amount of activity – and maybe it’s more necessary or I have the thought that it’s more reasonable, depending on how I feel. Get what I mean?

Back in the summer, my pacing allowed me to be able to have a great visit with my friend.

There is A LOT of evidence that pacing works. Not just for me, but from other chronic pain and illness warriors. I’ve interviewed a ton of people on my podcast and have noticed that many of them use pacing. I attended the World Pain Summit earlier in the fall and 2 of the presenters, who were both people with lived experience (not healthcare professionals) talked about pacing and how it’s helped them. Heck even look at these search results on Google Scholar and you can see all the academic journal articles written on the subject. Pacing works – even with fatigue.

We did this by alternating activity with rest.

But how do you figure out what your pace is? Here are some key suggestions when it comes to pacing:

  • Plan your day. We all have an idea of how we’re feeling when we get up in the morning, so having a plan of what sounds manageable for the day is a good place to start.
  • Break up your activities and alternate at rest. For example, if you decide to clean the house, just do 1 room at a time and take a short break (30 minutes) in between.
  • Prioritizing your activities. I align this with Values-Based Living. What is most important for me to do today? Why is it important? For me, my health is important (yes, even having a chronic illness) so doing some kind of movement that will keep me active and ultimately decrease pain (I’ve done many posts on movement for pain management) is essential.
Values-based living is engaging in activities that align with your values.

Even if you’re having thoughts that pacing seems impossible, just note that those are just thoughts. There are many people who can help you get started with pacing (occupational therapists, psychotherapists/counsellors, physical therapists, etc.) and the whole point is to improve your well-being so you can keep making the most of it!

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Setting Boundaries

Boundaries are super important for all of us. With work, relationships, even ourselves. While boundaries are important for everyone’s mental health, I think that for Chronic Illness Warriors, the key is to be able to set boundaries that still allow you to ask for help when needed. I would say that I am pretty good at setting boundaries, but that was definitely a skill that I developed over time. I was reminded of boundary setting as I was preparing for group counselling that I’m co-facilitating as part of my practicum. So I’ll admit I’m borrowing some of this information from Marsha Linehan’s Dialectical Behaviour Therapy (DBT). The group has a few pscychoeducation components as well as counselling, including mindfulness (you know that’s my favourite), emotional regulation, distress tolerance, and interpersonal relationships. Though I’m not a “DBT-er” (I’m clearly happy to be co-facilitating the group though and learning all of this) I think that many bits of information from DBT and this course have great applications for many of us! (For those of you wondering I am drawn to existential therapy as well as Acceptance and Commitment Therapy).

My best llama impression.

Okay, so why should we set boundaries? Boundaries allow us and others to know what we are okay with and what we are not. For example, some people are huggers while others don’t like to touch (granted Covid, so many of us are in the non-hugging category right now). The person who doesn’t like to be touch needs to tell the other person (politely, if possible) that they are not okay with that. The tough part with boundaries is that if they are crossed, it can be awkward or feel rude to point that out. However, your mental health is important and if you’re really not okay with something it’s good to be vocal about it. Another example is a work one. Is it okay for your work to contact you when you’re not there? I was in a position about 6 years ago where I told my work it was totally okay for them to contact me when I wasn’t there. About two years ago (same company, different store) I told them I wasn’t okay with it. I set the boundaries and stuck with them based on the level of stress I was able to handle at the time.

Costa Rican jungle.

When it comes to chronic illness, setting boundaries can revolve around many different areas, but I’ve found two are the most important: others, and ourselves. With others, you can decide how much or how little information those in your lives get about your illness/health, mental health, etc. I totally believe in sharing but everyone has different comfort levels with sharing, and I totally respect that, as I expect others to respect mine. Boundaries can also include what other people get to help you with. I loosened my boundaries after my hip surgery because I acknowledged I needed more help. Now granted I found myself feeling more grumpy at the time, but it wasn’t because I changed my boundaries, it was because I couldn’t as much myself! And that ties into our boundaries with ourselves. What are we okay doing? Saying? When we push our boundaries are we doing it to help ourselves or because we “think we should”? Sometimes it’s okay to push personal boundaries. With phobias for example, it’s possible to get over them by stepping out of your comfort zone and confronting the feared animal/situation/whatever it is (best to do it with a professional but I’ve known people to do this on their own). Getting over a phobia can be helpful for overall mental health. Saying yes to a night out with friends when you’re not feeling up to it is an instance of crossing your personal boundaries when it is not okay.

Castle in Ghent, Belgium.

I’ve been sharing example from a “personal bill of rights” (Linehan, 2015) throughout and if you’re struggling with boundaries, I would say create your own (or use which ones of these resonate with you). Even stick it somewhere that you’ll see it often. Remember, that boundaries while important should be flexible because they lead to healthier relationships (including the one with yourself). I would love to see what you come up with so feel free to share on Instagram and tag me (@janeversuspain)!

Have a great week and keep making the most of it!

How Do You React to New Symptoms and Side Effects?

What do you do when you have an expected new symptom? Or weird side effect from a drug or surgery? Or a better question, how do you feel, not just physically but also emotionally? It’s tough having a chronic illness. It’s tough starting a new medication or having a surgery. And so many chronic illnesses are invisible, so it’s difficult for others to understand exactly what is going on with us.

This is what invisible illness looks like.

The inspiration for this post came from my experience on Saturday morning. I had a hip arthroscopy two weeks ago, and on Saturday when I woke up and started to hop around on my crutches, my foot turned purple, as if all the circulation was cut off. I had a friend staying with me, and honestly, her reaction heightened my anxiety about it. I managed to keep a somewhat level head, emailed some of my practitioners and texted my brother’s partner who happens to be a doctor. Apparently this is a normal reaction after lower body surgeries. Basically I have to keep my foot elevated (at least at heart level) as much as possible. I did also go to the walk-in clinic that my family doctor works at. The doctor I saw looked at my foot and double checked that there were no blood clots, then suggested elevation and compression socks and sent me home.

Purple foot – Saturday morning surprise!

There are a couple of reactions we can have in situations like these, which, let’s be honest, happen often when you have a chronic illness. One, is fear, which, like I mentioned, is easy to be drawn to. It’s the fight-flight-freeze response, with flight or freeze usually taking over. It can be scary, overwhelming, anxiety-producing, even upsetting. It can also cause depression and sadness, because of course, something else stupid and terrible has happened to you. These are normal reactions, and short term responses like this are totally fine. The problem develops when these feelings take over, especially when you have a chronic illness because these situations, these stressors, are going to keep happening. If you are feeling like this more often than not, it’s time for some professional help. Seek out a therapist, because you don’t have to feel this way forever.

Image from: https://www.chconline.org/resourcelibrary/fight-flight-freeze-anxiety-explained-for-teens-video/

The second reaction kind of goes more with the “fight” part of the fear/anxiety response. This reaction is one I often go with which is “how am I going to solve this problem?” I do research (I will literally read scholarly journals online as well as just reddit threads – I need all points of view). I will ask the professionals I know, and the other Warriors I know. I will buy anything I need, whether I have the money or not. I will ask for help (I mean like I needed a ride to the doctor after all). This is a proactive response. The problem with this response is that it can ignore emotion. So, if you’re like me, it’s good to take some time alone to reflect, maybe use some mindfulness, get inside your body and your emotions and let them be what they are. Holding it in can make things worse in the long-term. Mindfulness will be your friend.

This is what I got with my proactive approach – a elevation pillow.

A third reaction is acceptance. It doesn’t mean you don’t experience the short-term emotions of fear and anxiety mentioned above. It doesn’t mean you don’t do some proactive things so you can take care of your body and your symptoms in the long-term. It just means that in the present moment you can understand that this is a thing that happened. It is not a reflection of you. It is (usually) not unsolvable. We all have to deal with acceptance when we have a chronic illness. I did a whole podcast episode on illness acceptance (which I will link below). This is something I strive for always. Can I be accepting when something I don’t anticipate or like happens? I would say for myself, the answer is yes. I do tend to be proactive first, then I try to use mindfulness to experience my emotions, then I try to accept reality. Is this always a perfect process? No. I do have people in my life to help me – mainly a psychotherapist and a naturopath – who are specialists in this kind of work.

Image from: https://www.smartliving365.com/the-problem-with-accepting-what-is/

I hope everyone has a great week. Reminder, I have a premium blog post coming out on Saturday, so if you’re not signed up and you want some more work on self-care strategies, it’s only $5/month and it’s well worth it. Remember everyone, keep making the most of it.

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