Illness grief is a type of disenfranchised grief that is common amongst those of us with chronic pain and illness. Loss of who we were before, what we could do, relationships, careers, etc. that are associated with pain and illness. Disenfranchised grief is grief that isn’t well understood by the larger population.
Sadness and grief are common emotions to experience when dealing with chronic pain and illness. Illness grief consists of grief of the loss we once had. (Here’s a podcast episode about it). When sadness is particularly strong, depression can set in. Finding effective coping strategies is important for all chronic pain/illness warriors. This meditation is one that can be quite helpful.
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.
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.
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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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.
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.
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.
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.
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.