lupus – Chronically Living

Ways to Improve Your Stress Response: and the correlations to chronic illness

I was listening to a podcast a few weeks ago and the guest was talking about the physiology of our fight-flight-freeze response and how it can specifically relate to certain chronic illness. The guest used the following examples: lupus as being the fight response, and CFS/ME as being the freeze response. I had never thought of it this way and it made me interested in this topic. (The podcast is called Therapy Chat if anyone is interested but I can’t remember the specific episode number, sorry!). Fight-flight-freeze is also known as the stress response, which is a product of evolution that kept our species alive for a long time, however, if you ask many people with chronic illnesses (especially autoimmune diseases) you’ll have a lot of people tell you about chronic stress, trauma history, and attachment issues, all of which can dysregulate our stress response. Usually this occurs in childhood, and I can specifically remember 5 years where I had chronic stress (at school only, due to a traumatic friendship).

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

I’m going to try to explain the stress response in the easiest, most non-technical way possible (because honestly my eyes glaze over when I have to read about brain anatomy, and I’m guessing I’m not alone in that). So there are a few different parts of our autonomic nervous system, most notably the sympathetic nervous system (fight and flight) and our parasympathetic nervous system (freeze). There is also our vagus nerve which is really important in understanding the nervous system but I’ll leave polyvagal theory for another time. Sympathetic activates us to either fight or run away in order to survive, whereas the parasympathetic suppresses everything in order to keep our bodies alive when we can’t fight or flight. The problem is that when our stress response is chronically activated, it can impair our physical and mental health. I want to put a caveat here for the rest of this post, correlation does not mean causation, however, most theories do point to chronic stress as being causation (at least partially – biopsychosocial approach) for a lot of illnesses.

Image from: https://www.youtube.com/watch?v=DPWEhl7gbu4

I think it’s also important to talk about stress-related disorders, because they tend to also be diagnosed in people with autoimmune diseases. Examples include acute stress disorders (same symptoms as PTSD but only lasting between 3-30 days), posttraumatic stress disorder (which most people seem to have a basic understanding of), and adjustment disorders (occurs during major life changes). Attachment disorders can also contribute. One study I looked at found that people with a stress-related disorder were more likely to not only develop an autoimmune disease, but to actually be diagnosed with multiple ones, and had a higher rate of them if they were younger when having the stress-related disorder.

Image from: http://traumadissociation.com/trauma-stressor

Let’s talk about chronic stress – when our stress response is activated for a long period of time (i.e., daily stress as opposed to one major stressor) – because a lot of research has been done in this area. Here is a bunch of things that chronic stress can do:

contribute to high blood pressure
contribute to anxiety, depression, OCD, anorexia nervosa, and substance use disorder (and withdrawal)
contribute to obesity (increase appetite, leading to weight gain)
suppress or dysregulate immune function (leading to inflammatory disorders and hyperactive immune systems such as in RA and lupus)
suppress the reproductive system
suppress growth in children (lots of studies of children in orphanages)
digestive problems
switch off disease-fighting white blood cells, increasing risk of cancer
worsen symptoms in lupus patients
contributes to malnutrition
contributes to poorly controlled diabetes
contributes to hyperthyroidism

So that’s a lot. I mentioned ME/CFS as the beginning of this post as well, which is associated with the physiological state of freeze, as examined by metabolic changes. Some research indicated that people with ME/CFS are “wired,” meaning a combination of both the fight/flight and freeze responses, leading them to feel wired and tired at once. I hope this gives you some understanding of what is going on with you if you have any of the illnesses mentioned in this post. Understanding is one thing, but what can we do to help ourselves, especially if we are in a chronic stress response? While there is no right answer, there are definitely things we can try (and a bunch have worked for me!)

Deep breathing (into the diaphragm) – for many people this lowers stress (it sometimes increases anxiety for me, so I personally find it more effective to do mindful breathing)
visualizations and guided imagery – try this one out.
Prayer – this is a mindful activity that many people find helpful
Yoga and Tai Chi – mindful movement can be very grounding – listen to this podcast episode about it.
Walking (and other forms of exercise) – for many people this lowers the stress response, for some people it can increase it due to heart rate increases
Journaling – you have to like to write/journal for this one but it can be helpful to get your thoughts out of your head
Biofeedback – this is a technique in which you can learn to control some of your bodily functions (i.e., heart rate)
Progressive Muscle Relaxation – try this one out.
Massage – I personally find massages to be both relaxing and therapeutic
Acupuncture – there is research showing it helps with both stress and chronic pain
Social Support – from friends, family, colleagues, support groups (in person or online), and pets!

Hopefully that gives you a few ideas for how to lower your stress response. Keep making the most of it!

How Accurate Are Media Portrayals of Chronic Illness?

Chronic illness representation in the media has grown dramatically in the past 35 years, which is probably a good thing, because the more we talk about illnesses, the less stigma there is, and hopefully, the more research gets funded so that one day they may not have to be chronic (I know that’s probably way too big of a dream, but hey, gotta be at least somewhat optimistic). I think most of us can probably agree though, that many of these portrayals aren’t very good… or realistic. The main problem that I see, at least in the world of fiction, is that the stakes are always super high – it’s life or death – which isn’t the case for most of us living with chronic illness, at least not on a regular basis (and of course, it does depend what illness we are looking at). There’s also always some kind of unrealistic love story surrounding the illness, which from those I’ve talked to in real life, doesn’t seem to be the case for most people. But, we can probably forgive Hollywood because at the end of the day they’re a business trying to make money. So let’s dive into some, perhaps more accurate or partially accurate portrayals in the following categories: fictional film & tv, documentary film & tv, celebrities, and music.

Me in “Hell-A” (2018) – hopefully you get the reference to the Bran Van 3000 song.

Fictional Film & TV
This is where most of the problematic portrayals are, but there are some portrayals that are better. I’m not going to get into an extensive list, but just highlight a few. For TV, I would say Degrassi – and I don’t mean just the most recent iteration of this 30+ running show, but going back to the beginning. In Degrassi Junior High/Degrassi High (1987-1991), Caitlin was diagnosed with epilepsy, and LD had leukemia. The original series was extremely realistic in a lot of ways, which probably lent itself to doing these story lines well. A more recent version of the show apparently did a good job with a cystic fibrosis storyline.
Movies wise, I though Love and Other Drugs did a good job with a young person who had Parkinson’s, and Brain on Fire, took us through the journey of a young woman being diagnosed with a rare autoimmune disease. This movie was based on a true story. Of course, there are a number of other good portrayals out there, sometimes we just have to sift through the not-so-good ones first.

Caitlin (portrayed by Stacie Mystysin) on Degrassi Junior High.

Documentary Film & TV
This is a way better place to find accurate portrayals of chronic illness, because we’re actually following real people in their real lives (I do want to say that even in docs some things are contrived. I’ve worked on a few in my previous careers and we’ve had people change their clothes, or pick locations we should do things to help move the “story” along, but overall they are still more accurate than fiction). TV wise, I found a show (on Netflix I think) called Diagnosis, about a team of doctors diagnosing people with rare illnesses, that had been unable to be diagnosed by any other doctors. It was pretty cool (there was one girl who was ultimately diagnosed with somatic symptom disorder, which may be controversial for some of you, just a warning). Other docs that I liked include Gaga: Five Foot Two, which highlight Lady Gaga’s fibromyalgia; and Gleason, about former NFL-er Steve Gleason who was diagnosed with ALS in his early 30s.

Image from: https://www.nola.com/entertainment_life/movies_tv/article_1e6341a4-9d4f-5c20-bc3d-77ad3224d196.html

Celebrities
I know a lot of people find it annoying when celebs talk about their illnesses, because at the end of the day, they have a ton of money and can usually afford amazing care and things that the rest of us can’t. Here’s why I like when celebs do talk about it: (1) it gets the convo going, (2) they often use their fame to help generate fundraising, and (3) it normalizes illness for people with and without illness. Some celebs who have done a good job in this arena are Michael J. Fox (Parkinson’s), Selma Blair (MS), Selena Gomez (Lupus), and Sarah Hyland (Kidney Dysplasia).

Michael J. Fox
Image from: https://www.biography.com/news/michael-j-fox-parkinsons-diagnosis

Music
This is the other category I would say is “highly accurate” because often the singer-songwriters are singing about their own personal experiences with their illness. Music is typically quite raw and real (some genres more so than other), and many of the songs about chronic illness feel honest. A couple we could highlight (and really there are a ton I could put here but I’m just going to pick a couple) are Believer by Imagine Dragons (about ankylosing spondylitis), Caves by Jack’s Mannequin (about leukemia), and Head Above Water by Avril Lavigne (about Lyme Disease).

Image from: https://www.youtube.com/watch?v=Q9ILGc5kwIw

What are some of your favourite portrayals of chronic illness in the media? Feel free to comment on the blog or tag me on Instagram @chronically.living_
Keep making the most of it!

Support my content on Patreon.

Processing…

Success! You're on the list.

Whoops! There was an error and we couldn't process your subscription. Please reload the page and try again.

Expressive Writing for Health & Mental Health

I love writing (hello, this is a blog after all) and I’ve always found it to be helpful for me in my own life (and health) journeys (that and music). I came across some research on the mental and PHYSICAL health benefits of expressive writing, so I did a bit more digging and damn, we should all be doing more of it! And hopefully, this post will inspire you to do some. Hearing that there are mental health benefits is probably less shocking than that there are physical health benefits to expressive writing, so we’ll start there, but before we get into that, let’s quickly establish what expressive writing is. Expressive writing is simply writing about our deepest thoughts and feelings about an event or situation, without holding back. When people do this, it is often through journaling, and is often free-writing, without too much thinking about it. It can be done on the computer or by hand, really whatever you prefer. The leading pioneer in this research is Pennebaker (too many articles to site them all), but I’ll site some of the other research on the subject (which also references him) at the end of the post.

Buying a journal (or using an online one) can get you in expressive writing mode.

Okay, so the mental health benefits:

reduces stress
reduces symptoms of depression
reduces post-traumatic symptoms
improves mood
improves focus and concentration – including in people with ADHD
improves working memroy
improves emotion regulation (which is our ability to control the quality, frequency, intensity and duration of our emotional responses to situations)
and it increases our self-awareness

If these aren’t good enough reasons to do some expressive writing, then maybe the physical health benefits will convince you:

decreases the number of doctor’s visits you’ll have
reduces the number of days spent in the hospital
reduces the overall number of hospitalizations – i.e., people with cystic fibrosis
reduces blood pressure
reduces chronic pain – i.e., cancer and chronic pain conditions
reduces the severity of inflammatory conditions – i.e., rheumatoid arthritis, lupus (SLE)
improves immune functioning – i.e., cancer, HIV
improves lung functioning – asthma
improves liver functioning
improves and speeds up post-operative recovery
improves overall physical well-being

Image from: https://frugalentrepreneur.com/2017/12/what-to-offer-your-employees-to-improve-their-wellbeing/

And then, if that’s still not enough for you, there are some other general benefits:

reduced number of “sick” days from work plus faster return to work if you were layed off
increased GPA in university students
improved sporting performance in athletes

Even improve sporting performance! Me and some friends after a curling tournament in 2019.

Okay, so how does this all work? I mean, I understand how it can improve some of the mental health problems we may experience, because we’re writing about our thoughts and feelings. But how does it improve our physical health? Well, actually the two are related. Remember that stress has a HUGE impact on our physical health, and the mind and body are connecting, meaning that anxiety and depression can also feed into (and trauma can cause) physical health problems. The processes of expressive writing are as follows:

it allows for cognitive processing and restructuring of painful events and situations – cognitive restructuring changes how we perceive emotional stressors (both internal and external)
it allows for repeated exposure – which is controlled re-experiencing of events and situations so that they have less influence over our minds and behaviours

Image from: https://www.avalonintegrativewellness.com/blog/what-is-cognitive-restructuring/

Improving our bodies, improves our minds and vice versa. Here’s the podcast episode on it.

How do we engage in expressive writing? According to the experts we need to write about our deepest thoughts and feelings, without holding back, about situations or events or really anything relevant to us at this moment that are painful. This could be anything from having cancer, to spending time in the hospital to going through a traumatic event. When we sit down to write, it should be for 15-20 minutes at time, without stopping, and be done on 4 consecutive days. Just doing that is enough to lead to all the benefits I listed earlier. It’s possible that more consistent writing could have more improvements, but I honestly didn’t find much on that. So, I’m curious, who’s going to try out some of this expressive writing to see if it helps?

I want to remind everyone that in addition to this blog, if you’re looking for more information to improve your health, I have a podcast: Chronically Living and how to make the most of it, which is available on Apple, Spotify and everywhere else you get podcasts, including this web link. I also have a YouTube channel for those of you looking to incorporate more mindfulness as it has a number of benefits for your physical and mental health as well: Kelsey L Harris Meditations.
Until next week, keep making the most of it!

References:

Baikie, K.A., & Wilhelm, . (2018). Emotional and physical health benefits of expressive writing. Advances in Psychiatric Treatment, 11(5), 338-346. https://doi.org/10.1192/apt.11.5.338
Lepore, S-J., Greenberg, M.A., Bruno, A., Smyth, J.M. (2002). Expressive writing and health: Self-regulation of emotion-related experience, physiology and behaviour. In S.J. Lepore & J.M. Smyth (Eds), The writing cure: How expressive writing promotes health and emotional well-being (p. 99-117). American Psychological Association. https://doi.org/10.1037/10451-005
Stanton, A.L., Danoff-burg, S., & Huggins, M.E. (2002). The first year after breast cancer diagnosis: Hope and coping strategies as predictors of adjustment. Psycho-Oncology, 11(2), 93-102. https://doi.org/10.1002/pon.574

Diagnosis Update

Isn’t it always the case when you have an autoimmune disease that there are multiple updates over the years? Like either a change of diagnosis or an added diagnosis. I follow so many people on Instagram with the same experiences. This week I had an appointment with my rheumatologist (and a resident, so two docs which was fun – by the way I love that the hospital I go to is a teaching hospital because I think that makes everyone work a little harder to provide excellent care), and of course there is an update to my diagnosis.

Image from: https://www.niehs.nih.gov/health/topics/conditions/autoimmune/index.cfm

Lets travel back a bit. First I was given an incorrect diagnosis of gout back in 2015 by my GP. Fast forward to February 2016 when I first saw my rheumatologist, ran some tests and then a month later gave me (maybe a little too quickly) a diagnosis of lupus. Fast forward to June 2016 and she added fibromyalgia to the list. Then we skip over to November 2016 and she decides that I don’t qualify for a lupus diagnosis and I am a “mystery.” So I have remained with a fibromyalgia diagnosis since then.

Now my diagnosis has been updated to Undifferentiated Connective Tissue Disease, which upon looking up what exactly that was, makes a lot of sense. So what is UCTD? It’s a systemic autoimmune disease that doesn’t quite fit the criteria for any differentiated autoimmune disease – like lupus, rheumatoid arthritis, or scleroderma, etc. I’ve read some different statistics on it, and it seems that around 25% of rheumatology patients have UCTD, and only between 20-30% of patients will eventually get a diagnosis of lupus, RA, etc. Symptoms usually include high ANAs, arthralgia/myalgia, arthritis, Raynaud’s, and fatigue, among a few others.

Image from: https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

My symptoms include consistently high ANAs on blood panels that are taken every 6 months, arthralgia/myalgia, I don’t quite get full-blown Raynaud’s but certainly very red and slightly swollen fingers in the cold, sometimes numbness in my fingers or toes, and fatigue. So, while I don’t fit the criteria for lupus, I certainly fit the criteria for UTCD.

Image from: https://www.medical-labs.net/anti-nuclear-antibodies-ana-3413/

Now how does this make me feel? Honestly, a sense of relief. I am happy to have a diagnosis again, and one that seems to actually fit what is going on. My rheumy is going to fill out the paperwork I need for my work coverage (because they’ve been after my sick days), which also makes me feel relieved. Basically, I feel like it’s good to get a diagnosis because the waiting game on diagnoses can be anxiety-riddling experiences as I’m sure many of you know.

Relieved at my diagnosis but missing my baby.

I also want to give you an update on Spike, because last week I mentioned he was at the vet. Unfortunately he had to be put down. I am heart-broken as I’ve lost my best friend.

How’s Your Pain Today?

I always have a million topic ideas in my head (well technically I write them down on Stickies because I don’t want to forget them) but I often end up going with something currently relevant to me because, well, it just makes more sense to. As I’ve mentioned before, in addition to fibromyalgia (and maybe lupus) I also have a tear of the anterior labrum (hip) – I’ll throw in a picture of what that looks like). This tear is brutal. Initially my rheumatologist told me that it could be taken care of with physio and if that doesn’t work, then surgery. She asked me if I’d like a referral to the surgeon, to which I said yes. This was March 2020. About a week before Covid-19 really went for it and we started shutting everything down, including “elective” surgeries (because is a surgery that will take away pain really elective?).

Image from: https://eorthopod.com/labral-tears-of-the-hip/

Anyway, the pain has normally been around a 7 in my hip. I’ve been doing physio (virtual) since the end of March and while my physiotherapist is amazing (check out my podcast), it also doesn’t really seem to be helping with this particular problem. Fast forward to last week Thursday when I leaned against a counter at work while I was talking to my boss… and I happened to learn right against the tear. Talk about excruciating pain running down my entire leg – hip to ankle! But I sucked it up and stayed at work and powered through. The pain now around an 8.

Even with pain at an 8 I can still enjoy the great outdoors (Niagara on the Lake, Ontario)

Fast forward to Monday, when I’m doing my normal hardcore workout. It’s an upper body one, so I’m not too concerned because my hip is normally fine on these workouts (sometimes I have to adjust lower body and full body workouts to accommodate my hip). Well, as I moved to get out a position, I heard and felt a “pop.” This seemed like my hip popped in and out of place (though upon some research I read that’s not really a thing that happens, so I’m not sure what exactly happened). Now the pain is a 9. I went to work Monday and Tuesday, and then got a doctor’s note for a week off from today (Wednesday) through next Wednesday.

Spike is a good nurse.

So how can I still smile and laugh through all of this? First of all, that’s not always easy. I have to frequently change my position (standing, sitting, walking, lying) in order to feel comfortable because I can’t really be in any of them for too long. At the end of the day though, I can sit and feel sorry for myself (or be hard on myself because technically it’s my own fault it got worse) or I can (a) be productive and constantly call the hospital to see if they can do this type of surgery now, and (b) realize that pain, even chronic pain, is a temporary sensation. I can do meditations that focus on physical pain (which I did this morning), I can write a blog post, I can rest, and I can still have a life with this, because the other option is to not and I refuse to do that.

Upo reserch, this is the type of surgery that needs to be done. Image from: https://orthoinfo.aaos.org/en/diseases–conditions/slap-tears/

How are you all feeling about your pain today?

Also, if you haven’t yet checked out my podcast – Chronically Living and how to make the most of it (Apple Podcasts and Spotify), the latest episode is on Pelvic Health. I would really appreciate some reviews and ratings for it (plus I have a little promotion going for that – see my Instagram @janeversuspain for more details).

From Virtual Dating to Real Dating? Pandemics, Reopening, and Chronic Illness

As we move into reopening phases in many places, some of us might be looking to take all of our virtual experiences and start going back to the “old ways.” Whether that be just seeing our friends in person (crazy thought after so many months, I know!) or going on actual dates, the thought that we don’t have to solely rely on online contact is amazing. Yet, for those of us with chronic illness, slow and steady might be the best course of action.

I miss getting coffees liket

I’m not saying you can’t or shouldn’t start doing “real life” things again. I have started to see some friends in person, and I’ve been back to work where I deal with the public consistently (some lady refused to sanitize her hands but then proceeded to put on a face mask which made me laugh at the lack of logic but okay). What I am more cautious about is heading on dates. For one, assuming any date goes well, there is potential for kissing at the very least (if not more) and exchanging saliva with a stranger when there is still a pandemic going on is probably not the best idea. As cases do become lower and lower that may change, but for now I’d still rather play it safe than risk getting an illness that could be made worse by my underlying illness.

Me at work… keeping others safe from me, and hoping they’ll keep me safe from them.

There is also the strong possibility of a second wave to come yet. If we look back historically to the flu of 1918, the second wave was much worse than the first. And though, yes this is a coronavirus, not a flu, a second wave could be terrible. While I am happy to be a risk taker in many areas of my life (adventure travel, moving provinces or countries at the drop of a hat, changing careers, starting blogs and podcasts, etc) I am not one to compromise my health more than it already is. Does that mean I won’t go on any dates until we have a vaccine? Unlikely, but it does mean I’ll be a little more selective of who I date (as if I’m not selective already lol) and how quickly things move.

Remember when we could share drinks with our friends without a worry?!

What are my other chronic illness warriors thinking about dating right now? Leave a comment, I’d love to hear from you.

Hydroxychloroquine & Covid-19 Deaths…What Does it Mean for Us?

As many of you probably recall, hydroxychloroquine and chloroquine, both of which are antimalarials and often used in the treatment of lupus/SLE were being tested a few months ago as a potential treatment for Covid-19. US President Trump of course quickly jumped on this bandwagon proclaiming that it was a “game-changer.” This was said, of course, as testing was being started, not because of results of testing that had finished. As a result, I remember seeing many Spoonies, particularly those with lupus panicking because they couldn’t get their medications as quickly. And to be honest, I quickly went and refilled my own prescription. Though I’m only borderline for lupus, my rheumatologist kept me on the drug as it seems to have helped my symptoms over the past few years.

Now, results of the first study have been reported in the medical journal The Lancet. And those results aren’t exactly great… Of those patients who received hydroxychloroquine or chloroquine as a treatment, many of them ended up with heart problems and died as a result. So my question is, what does that mean for those of us who are regularly prescribed these meds? As North America starts to open up again (too soon here in Ontario given our daily cases, and WAAAAY too soon in the States given that they haven’t come close to flattening the curve, does that put myself and everyone else at a higher risk of death if we do get Covid-19?

Good thing I stocked up… bad thing it could be dangerous.

Unfortunately from what I read in news articles, I couldn’t find an answer. And no, I haven’t read the study itself in The Lancet (I can only read so many journal articles in a week and I have to read a lot of them for school), so I don’t have an answer. It does make me weary though. I didn’t want to get Covid-19 in the first place, but now I’m feeling more apprehensive about it. I’m very curious how my other Spoonies/Warriors are feeling about all of this and what precautions everyone is taking. Last week I was told to expect to be back at work in the next 2-3 weeks, and I work with the public. And while my company is providing masks to employees, we already know that is just to protect others, and masks don’t actually protect us, which means I have to trust the public to come in with masks as well (based on what I’ve seen, I don’t trust most people). At the same time, as a furloughed employee, I have to return to work when called in. Quite the predicament.

Image from: https://www.lehighvalleylive.com/acts/2020/05/read-my-lips-coworkers-create-clear-masks-for-hearing-impaired-manager-of-lehigh-valley-best-buy.html

Here is the link to a news article from the Washington Post about it:

Washington Post: Hydroxychloroquine Study

I’m hoping more information comes in about hydroxychloroquine and Covid-19, and what the hell that means for us. I’d love to hear your comments and thoughts on all of this, so please leave a comment, send an email (janeversuspain@gmail.com) or DM me on instagram (@janeversuspain). Stay safe.