What’s the Difference Between Chronic Disease Distress & Depression?

Despite my educational and practicum background in counselling, I hadn’t heard the term “chronic disease distress” before I attended the World Pain Summit this past October. When we think of mental health issues in relation to chronic illness and chronic pain, only anxiety and depression come up. This makes sense since the rates of anxiety and depression in those with chronic illness are slightly higher than in the general population (reports vary exactly how much, and it does depend on the condition). Learning about chronic disease distress, I realize that’s actually what I had – not anxiety – when I was first dealing with my illness and attended therapy myself. I don’t know what my therapist would have defined my condition as, but I fit the description better than anxiety or depression.

During the hight of my chronic disease distress I had the best support (RIP).

What is chronic disease distress? This is distress that comes with the stress of having a chronic health condition. It has some overlapping symptoms with both anxiety and depression, which can include anxious (catastrophizing) thoughts, rumination, sadness and crying, difficulty sleeping, etc. In CDD this is more related to the illness itself, rather than other areas of life. Now, that’s not to say that it doesn’t impact other areas of life. Having a chronic illness clearly does, but the distress all relates back to the illness at the end. If you’re able to go into remission or get a handle on your physical symptoms so they are less impactful, typically the distress goes down as well (the distress itself can also be treated but I’ll get to that in a moment).

Chronic Disease Distress doesn’t have to last forever.

What is depression? Clinical depression (major depressive disorder) is a set a symptoms that include, but aren’t limited to, feelings of sadness, worthlessness, guilt, loss of interest in activities, difficulty sleeping, difficulty with thinking, lack of energy, thoughts of suicide, and so on. Not everyone who is depressed has clinical depression (you can have some symptoms but not enough to get that diagnosis). Depression is a world wide epidemic and has a significant impact on people’s lives.

Some researchers have come up with a scale to measure chronic disease distress. This scale includes measures for emotional burden (of the illness), regimen distress (lifestyle impacts), patient-provider distress (medical gaslighting would fall in this category), social support distress, and then a total score. Only a qualified mental health professional can diagnose any mental health condition. Personally, I try not to worry too much about a diagnosis (unless a medication is warranted) and otherwise focus on the symptoms and distress facing you, me, or anyone else.

What do we do about chronic disease distress? Obviously seeking counselling/therapy from a qualified mental health professional (preferably one who specializes in chronic illness) is going to be the best route to go. Otherwise, certainly self-help sections in your library or bookstore, or listening to podcasts on the topic are good ideas. Support groups as well can be very helpful. In the meantime, personally I find mindfulness a good place to start. There is a lot of evidence of it being helpful (plus I’ve personally found it helpful!). Mindfulness doesn’t have to mean meditation, but if mindfulness is the muscle, meditation is the best exercise for the muscle. I have formal (meditation) and informal (non-meditation) mindfulness practices on my YouTube channel.

I hope this helps you understand the difference between CDD and depression. If you have questions, feel free to reach out. For now, keep making the most of it!

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Video: Daily Mindfulness – The Continuous You

In this practice we are working on developing the “noticing self,” “observer self,” “self-as-context,” or whatever you would like to call the part of you that notices everything. Many people find this type of awareness to be very beneficial in many areas of their lives. This was adapted from Russ Harris’ ACT made simple. The noticing self is something that I have found to be very important in my own life, and in the lives of my clients.

You can access my full meditation library here.

Keep making the most of it everyone!

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How Did I Prevent a Flare?

Plus who is this blogger and why should you care what I have to say?

I think that I sometimes give off the impression that I’m 100% fine 100% of the time, which as anyone with a chronic illness or dealing with chronic pain knows, is simply not true. What is true, is that I’ve learned several strategies over the past 5 years to improve my well-being, even on my days of struggle. Let’s take this morning (Saturday) as a write this. I had some pain in my hips (both of them). I live alone and needed groceries and don’t have a car, so I walked to the grocery store. My arms killed on the way home because I accidentally bought more than I could carry. Then the apartment building door whacked my right hip (the less sore of the two) which obviously caused more pain. And then I became angry. Like swearing, yelling, grumbling, angry. I got text messages and was annoyed at the people texting me even though they weren’t saying anything bad. Then I noticed what was happening. Was this anger helpful? No, if anything it was making my pain worse. So I took a moment, watched my breath flow in and out of my body, and calmed down mentally… and then it helped my body to calm down physically.

These are my favourite days.

So… who am I? I’m Kelsey. I’m a person with lived experience. I have diagnoses of undifferentiated connective tissue disease, fibromyalgia, and glaucoma. I’m also someone who meditates daily (over 100 days in a row – my longest streak). I’m someone who has bad days, and good days. I make it my priority to have way more good days than bad ones. I’m a person who went to psychotherapy among other treatments (physio, chiropractor, naturopath, massage, etc.) and found it helpful for my anxiety and ultimately my pain. And then I became someone who went back to school to get my Masters in Counselling psychology, which I have now completed, despite the fact that I was working full time and in pain. I am someone who is committed to helping others who are struggling. And I am someone who wants to share what I’ve learned – and what I’m still learning – with all of you. I am me.

Just waiting for my final mark, but it looks like a therapist now!

Why should you listen to what I have to say? Well, there is no particular reason and it’s completely up to you! What I can say, is that I try to bring my personal, lived experience, with research (yes I actually do a ton of reading of scholarly journal articles for my posts) and clinical experience so provide you all with different ways to improve your well-being. Take me this morning for example. Would it have been helpful to stay angry all day? Likely I would’ve had to spend it in bed and probably wouldn’t have written this post. I’ve found this to be helpful for me, so it just might be helpful for you. Along with this blog, I have other resources too. Like my podcast and YouTube channel, which you should definitely check out if you haven’t yet.

On Halloween I was a badass like Buffy.

Okay, so I thought we’d end on a fun note. Two truths and a lie. I’d love to hear in the comments which one you think is a lie.
1. I have spent the evening hanging out with a celebrity.
2. I recently got a new puppy.
3. Pineapple is my favourite fruit.

My podcast topic this week was utilizing your authentic self, and next week is about evidence based treatments for chronic pain. My YouTube channel has a new video for building self-awareness (which is how I knew to calm myself this morning!). Until next week, keep making the most of it!

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Daily Mindfulness: An Acceptance Practice

Sometimes we use mindfulness as a way to help us cultivate acceptance. This can be acceptance of difficult emotions or physical sensations. We can do this by observing and acknowledging the painful emotion or sensation is there as if we were a curious child; breathing into the feeling; making room for it by expanding around it; and allowing it to exist. This practice, if done regularly, can help lessen the intensity and hold these have on you. I often use this meditation with clients who have depression, anxiety, and chronic pain or illness. It is based on Acceptance and Commitment therapy. Give it a try and let me know what you think. My full range of meditations is available on my YouTube channel. Keep making the most of it everyone!

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What has your pain taught you?

I don’t know if you’re familiar with quicksand, but probably most of us have seen it in the movies or on TV. Our hero is on an adventure in some kind of jungle and they (or someone in their party of merry men and women) falls into what turns out to be quicksand. And they struggle and struggle and sink faster and faster. Usually in the movies the hero saves the day. Struggling in quicksand is a lot like what we do with our pain – both physical and emotional. We fight against it, struggling more and more, sinking deeper and deeper. But do you know how to actually get out of quicksand in real life? Like if you fell in it? Struggling makes you sink, and doing nothing – literally putting yourself into the floating position (arms and legs out, with zero resistance) will help you float to the top. From there you can take very slow, gentle strokes and get yourself out.

What the quicksand metaphor shows is that if you do the opposite of what you think you should do, you can often get to safety. In the case of pain, it means looking at it differently, changing your relationship with it. So that brings me to the question, what are your pain taught you? The answer can be many things. Maybe it’s taught you something about yourself. Or your relationships. Or your values/what’s important to you. Maybe it’s taught you something about the meaning of life. Or helped you set goals. Before straight off answering this question, really take a moment and ponder it. Because often the immediate answer is NOTHING! or THAT LIFE SUCKS! or something to that extent. But is that true? Is that all it’s taught you? Those answers often take us back to the struggle. You’ve fallen in quicksand by responding quickly with the first thing that comes to mind, rather than taking some time to really explore if there is something more you can get out of your experience.

Look, I get it, there is nothing fun about physical (or emotional pain) but that doesn’t mean it can’t do something good for us.

I’m going to use my experience as an example. And trust me, there was a time I was struggling in the quicksand and those would have been my answers. But here is what it has actually taught me, when I’ve taken the time to think about it:

  • I’m stronger – both physically and emotionally – then I thought I was, but it took a lot of work to get here.
  • Being treated with love and respect in romantic relationships and friendships is incredibly important to me.
  • I can do anything that I put my mind to, even if that means I have to adapt some things to what I can do.
  • Loving myself is the most important thing to me.
  • I want to have as many life adventures as possible despite chronic pain.
  • Everything I need is in the present moment, and sometimes the present moment isn’t great and sometimes it is, but that is how life is for everyone.
My first adventure after my diagnoses was to Vienna in 2017.

I’ve probably learned more lessons than that from my chronic illnesses and chronic pain, but should give you a picture of what it can teach you. Your answers will likely be different from mine. This is a key piece to acceptance, and if you can’t accept, you can’t really improve your well-being and quality of life. I want to make a few additional things clear with this post. First, I am not saying that your loss of health is a blessing or that you should be grateful for it. Sometimes as we move through illness grief, gratitude does appear, but that doesn’t mean you have to start looking for it. Also, meaning is not found in loss – it’s what you do after the loss. So the things I listed, are really about things I’ve done after I got sick. This is also not an exercise I’d recommend if you’ve just been diagnosed, because you won’t have had a chance to go through enough to be able to do it.

If you’re interested in contacting the present moment, check out my YouTube channel. This week’s podcast episode is on externalizing language, which can also be quite helpful – find it on Apple, Spotify, and everywhere else you get podcasts. Until next week, keep making the most of it!

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Can Acting “As If” Help Us With Chronic Illness?

No, we’re not talking about Cher from Clueless (did I date myself?). We’re talking about Alfred Adler, who was an early psychoanalyst, and whose work has contributed to the development of current psychotherapeutic techniques, including Cognitive Behavioural Therapy. CBT, it turns out, has been incredibly helpful for people living with chronic pain and illness. One of the many techniques Adler developed was acting “as if” which got me wondering, can this help with chronic illness and pain? I’m going to start off by saying, there is not a lot of research in this area, so we don’t really know, but I’m going to do a bit of theorizing today, with the research that I did manage to find on the subject.

Great movie, but not what we’re talking about today.
Image from: https://www.refinery29.com/en-us/2015/07/90743/best-clueless-quotes-movie

First, let’s maybe determine what acting “as if” means. This technique has the client make up a new story about themselves, their lives, their ability, or whatever else, for themselves and behave in the way that they would need to in order for this story to be true on a daily basis. (If you’re familiar with CBT you might recognize the cognitive and behavioural components here). Initially it was used for things like giving empathic responses, and being more assertive, or making decisions. The idea is, that by acting differently, and getting different responses from other people in your life because of it, your brain changes so that you can be more like this “new” person. I kind of thinking it as a mindset change.

Okay, I have a story before we move on. I was always a very shy person. To the point where I had some social anxiety as a child (literally would never answer questions in class, and was terrified of doing presentations, though I always had friends). That continued right into my twenties. In my twenties (and early thirties) I worked in retail, so naturally some of that social anxiety went away, but to be honest, a good portion stayed. That is, until I was in my early thirties. Then I decided I didn’t want to be so shy anymore. I set myself down a path where I would either be in situations where I couldn’t be as shy, or I would force myself to just talk more in situations I normally wouldn’t. I was essentially acting “as if” I was outgoing. Guess what? At 36, I can say that while I do get some butterflies in new situations, I definitely would not be considered “shy” or “awkward” or “socially anxious” anymore.

Little me.

But can this apply to chronic illness? And if it does, how exactly does that work? When we’re looking at chronic illness treatment, it’s always best to take a holistic, biopsychosocial approach. Typically, you’ll have a doctor (or team of doctors) that focuses on the biological aspects. Having a mental health care professional can assist with the psychosocial parts. There is a known association between self-efficacy, which is our beliefs about our ability to handle life’s challenges, and chronic illness and chronic pain disability. In other words, if we believe we can’t handle our illness or pain, then we won’t be able to and our illness and pain will actually be worse. This is where I think acting “as if” applies to us. We need to shift our mindset and starting acting “as if” we can handle the pain, we can handle the illness and the symptoms that go along with it. We replace self-pity with self-compassion. We are mindful of what we are doing and saying, and we start to take control of treatment (as holistically as possible). By doing so, our self-efficacy grows, and our pain lessens, and our illness has less control over our lives.

I would not be able to do most of what I can without self-efficacy.
2 years after diagnosis. Toronto -> Los Angeles. Solo Trip.

Okay, full stop. I know this might be a lot to take in, and you can’t even necessarily do this work on your own (though depending where you’re at with that self-efficacy thing, maybe you can). This is where having a support team, including a mental health professional might be helpful. At the very least, working on growing that mindfulness muscle and noticing what we’re doing is free to do (here’s the link to my meditation page which can help with that), until you can find (or afford) to have a professional help you. I truly believe in our abilities to live great lives, even with pain and illness. And, so, keep making the most of it.

New season of my podcast, Chronically Living and how to make the most of it, coming June 28, 2021.

Sophrosyne

This week I thought we’d examine the Greek word/philosophy of sophrosyne and how it applies to living with a chronic illness. The word was first introduced during a daily post on my favourite mindfulness app. I did some subsequent research and really felt it aligned well with many of my personal beliefs and values, as well as research I’ve read in other areas concerning both physical and mental health. So, I’m bringing this concept to all of you, because I think we can all learn from it and apply it to our lives in meaningful ways.

The Greek goddess of discretion, temperance, and moderation. Image from: https://greekerthanthegreeks.com/2015/04/the-greeks-had-word-for-it-sophrosyne.html

Let’s start with the meaning of the work. Sophrosyne was a Greek goddess of discretion, temperance, and moderation. Many people really hone in on the moderation part of this, and it’s sometimes considered “mindful moderation” when talked about currently. In Greek times, it also meant “excellence of character and soundness of mind” which is what created a “well-balanced” person. Moving forward in time, there are ties to Catholicism, in which moderation is considered the final of the cardinal virtues. Jumping ahead again, Nietzche considered moderation or self-control a virtue which could be extended to self-knowledge. It is the perfect union of self-knowledge and self-restraint, thus the moderation bit. And now, as my parents have always said “moderation rules the nation,” where they referring to sophrosyne? It would appear so.

We all have many opportunities to practice moderation. How well do you do?

Why is this important, or rather, how can it help Spoonies and Chronic Illness Warriors? Well, lots of ways actually. Moderation generally requires us to be mindful of what we’re doing. We can moderate our food intake, for example, if we pay attention to how many chips we just ate, or with drinking as in how many beers we just drank. For chronic illness, this type of mindful moderation helps with self-care (which if you’re a premium content subscriber you know has benefits for physical well-being, emotional well-being, intellectual well-being, social well-being, spiritual well-being, and even work well-being). It also can help with medication management (because we know if we took our medication/properly), with emotional regulation (how we deal with our emotions so they are effective), and can decrease stress (we’re not putting ourselves into stressful situations and can recognize when we are in them, giving us the opportunity to turn away). On top of this, the mindfulness piece has a number of benefits for mental and physical health, many of which I’ve blogged about – but you can also listen to on this podcast episode.

Engaging in mindful moderation can have many benefits to health.

So, how can we practice sophrosyne in our lives? Moderation isn’t always the easiest thing to do, especially if it’s not something we’re used to. Here are three ways:

  1. Practice regular mindfulness – this could be formal meditation, mindful eating, mindful walking, or really doing anything while being fully present in the moment.
  2. Relaxation – using techniques to help keep us calm make it easier to engage in mindful moderation. Again, formal meditation works, as does breathing and progressive muscle relaxation exercise, journaling (I like the gratitude journal personally), or going to therapy to talk about our problems.
  3. Emotional Regulation – by learning and practicing emotional regulation skills we become less likely to be impulsive, and therefore, more likely to be able to engage in moderation.

I started a meditation and mindfulness channel on YouTube that currently has meditations, relaxation exercises, and grounding techniques. I will be adding more informal practices in the coming weeks. You can check out the channel here. Like and subscribe so I can keep bringing more content to it.

New mindfulness practices added weekly.

I’m going to continue to try my best to live the ideal of sophrosyne because I can see the benefits it can have and does have on my life, including my chronic illness and my mental health. I hope it can do the same for you, as you keep making the most of it!

Daily Mindfulness: Observing the Breath

Getting present is so important because it allows us to not dwell on the past or future, or to only feel strong sensations (such as chronic pain). Instead it allows us to take in our whole experience. This is extremely beneficial for people with chronic pain and illness, and it take A LOT of practice (for example it took me around 3 years to get good at this). This is one mindfulness practice that you can use.

If you’re interested in more mindfulness, I recently started a new YouTube channel called Kelsey L Harris Meditations, where you can find this and more meditations!

For now, keep making the most of it!

Therapeutic Yoga

Background music via https://www.FesliyanStudios.com

This is yin yoga at it’s finest. Contacting the present moment, maybe lucking out with some relaxation but the purpose is to be present. Here’s the link to the 30 Day Yoga Challenge by Timothy Gordon (The Zen Social Worker). I highly recommend checking it out. Check out this podcast episode on mindfulness too. Let me know how this goes in the comments and keep on making the most of it!

10 Ways to Improve Your Mental Health When You Have a Chronic Illness

When I was first diagnosed with a chronic illness, my mental health started to suffer. I actually tried to hide that, even from myself, but my anxiety increased over the first 7 or 8 months until I started seeing a therapist (and thus my journey to becoming a therapist began). The thing is, I’m not alone as far as my story with my chronic illness taking a toll on my mental health. Many, many chronic illness warriors have been through the same thing. So, if you’re reading this and you’re struggling, know that it is normal and it is okay to struggle. Also note that change is slow. I can give you these 10 ways to improve you mental health (as I did a few weeks ago with physical health) but you aren’t going to feel better overnight, or after the first time you do these. It takes repeated practice and effort on your part (I still practice all of these!). If you’re ready for that commitment then let’s get into it!

How’s your mental health right now?
  1. Support and Connection – this is pretty much the opposite of isolation, which is common with chronic illness, and mental health issues such as depression and anxiety. Support and connection can come in the form of joining formal support groups (which are likely still mostly online due to the pandemic, but may be in person depending on where you live), or informally by talking with your family and friends, or connecting with others in the Spoonie community via social media. As we’ve seen from the pandemic, isolation is not good for our mental health so do what you can to stay connected. Check out this podcast episode.

2. Mindfulness – I know this comes up a lot but there are many, many studies showing that this has powerful effects on both physical and mental health. It can be formal meditations, but it doesn’t have to be. Mindfulness can be fully engaging in an activity, such as mindful eating or mindful walking. If you’re present you’re unlikely to be ruminating about the past (depression) or worrying about the future (anxiety). Take a listen to this podcast.

Being mindful take practice.

3. Assemble your healthcare team – that includes someone to help you with your mental health. If you can’t afford to see someone in private practice, check out community settings. I’m currently doing my internship in a community setting, where our services are free. There is a bit of a longer wait time, and is usually brief/short-term service, but it is definitely a good option for many people. Check out this podcast on depression and this one on anxiety.

4. Use holistic approaches – what I’m talking about here are approaches that utilize the body-mind connection. If you’re lucky you can find several practitioners that do so. For me, my physiotherapist has a BA in psychology so she always takes a body-mind approach (podcast with her here), and I also saw a naturopath before I moved, which is all about the body-mind connection. They can give you more ideas for how to take care of your mental health and understand it interacts with your illness. This podcast is with my naturopath.

Make sure your healthcare team is able to help you with all aspects of your health.

5. Get moving – movement, of any type, is helpful not just for your physical health but for your mental health to. There have been studies to show that exercise decreases depression. Even if you’re not super mobile, going for a walk, doing some yin yoga, or taking up Tai Chi (podcast here) are good options to increase those endorphins and other neurotransmitters in your brain.

6. Connect with your values – who and what is important to you? If you can figure that out, then try to brainstorm some ways you can continue to live by your values, even with chronic illness. I’ll give you an example from my life. It is important to me to have adventures. Obviously travel is harder with a chronic illness, but it’s not impossible. So my friend and I (pre-pandemic) went on an “adventure vacation” to Costa Rica and for every “adventure day” we did a “rest day.” Honestly, it worked out super well, and we both felt more mentally and physically healthy that trip then we had in a long time. Check out this podcast.

Connecting with my values and doing what matters to me.

7. Do what matters – this ties into this above, connecting with your values. Once you have done the brainstorming, it’s important to do the things that matter to you. So for me, it was travel. It might also be spending more time with family and friends, or being creative. Doing the things (what therapists call behavioural activation) actually decreases depression (lots of evidence here). Check out this podcast for more.

8. Find an outlet – this might tie in to doing what matters for you. My main outlet is writing (probably no surprises here), but I have other ones too, such as playing the piano and colouring. I know a lot of people use art or photography or music or dance. It doesn’t necessarily have to be a creative outlet, but creativity can be useful, because a lot like exercise, it gets those helpful brain chemicals to increase.

Being in nature also matters to me and is an outlet as well.

9. Distance yourself from thoughts, feelings, sensations, etc. that are “hooking” you – what I mean by hooking, is the ones that pull you away from your values, the ones you can’t stop thinking about and make your anxiety/depression/etc worse. If you think of it like fishing, when you cast, and then hook a fish, you immediately start to reel it in, and the fish struggles, flopping around. This is what some thoughts, etc. can to do us – make us struggle and flop around, doing things that are unhelpful. By putting some distance between ourselves and them can help decrease their power (this includes physical sensations of chronic pain).

10. Acceptance – whoa I know this is a big one because no one really wants to accept that they have a chronic illness. And yet this might be the most powerful part of the list for Spoonies. Not just accepting that you have a chronic illness, but allowing your to sit in the physical sensations of pain (without getting “hooked” by them), and allowing yourself to sit in feelings of sadness and anxiousness, etc. These are all adaptive for us. They are part of our evolutionary history. They are here for a reason, and we can learn to allow them to be without it stopping us from doing what matters.

Acceptance can feel peaceful.

I’m sure I’ve given you a lot to think about, so that’s all from me for this week. Keep on making the most of it!

And don’t forget, the self-care challenge starts for premium members on April 24. If you haven’t signed up yet, it’s just $5 CDN for 4 weeks of posts and check-in around self-care!