Hey there @SarahD1702, been trying to find your thread as I remember reading about your health concerns and wishing I could offer support. At the risk of being someone older giving patronising advice, I just wanted to reassure you that it doesn’t matter how real, dramatic, or “mental” you feel about your health, it’s all valid to you and can of course totally affect you overall. Your mental health is still part of your overall health and also needs tending to.
It does seem that anxiety can take over and affect you adversely from what you’ve shared, so I wonder if I may offer you an exercise that helps me when my own anxiety takes over? I live with PTSD as well as Polycythaemia vera (PV) and have had to figure out ways to minimise the inherent anxiety of trauma and cancer.
Mindful ABCs of STOP:
S – Stop
T – Take a breath
O – Observe what’s going on
P – Proceed
This can be done any time during the day when you remember. You become aware of what’s going on around you or inside of you, you ground yourself with some conscious breaths, and then you proceed with more clarity and from a place of choice.
Here are three ways to practice STOP in more depth:
A: STOP for awareness
Using the STOP practice to become fully aware of the present moment. What is going on in the body? The mind? The emotions? Or ask yourself what is out of my awareness right now? It can be as simple as noticing your brain is foggy after being on a long call, or that you need to stretch your legs outside, or that you have been preoccupied with an upcoming meeting all morning. Simply stop and take a breath.
B: STOP for beauty
Pause for a moment and notice something beautiful in your surroundings. It can literally be to “stop and smell the roses”. Use all of your senses to find something to focus on and then take it in visually for a breath or two. If that feels too big of a stretch you can say to yourself; “I know this is a stressful moment right now, but if there was something beautiful about it, what would it be?” Maybe then we notice the flowers on the table, which blend into the background when we are busy. Or the beautiful hair of the person in front of us in the queue at the shop. Maybe even the delicious aroma of the trees around us, heated by the sun.
C: STOP for compassion
In a moment of stress or pain, practice STOP to open your heart to kindness and compassion. Compassion is a natural, caring response to suffering, big and small, in ourselves and in others. Sometimes the tug of compassion calls us to stop, at other times we need to stop and really take something in, so we can be more open to inviting compassion in. Maybe we are a little impatient with a loved one complaining at length about something that happened to them. Maybe the adult brain doesn’t see it as hurtful but stopping and truly listening might allow us to connect with the truth of someone else’s hurt and help us to empathise a little better.
These are clinically researched ways to slow down the racing thoughts that anxiety can bring on, and they help me in my most triggered states so I hope they might help you too. Part of the trick of dealing with the very natural anxiety response in ourselves is to acknowledge that being hypervigilant has helped us as human animals in the past, but now we don’t have to be so wary of predators and prehistoric types of danger. We don’t need to be on high-alert for so long and it in fact can do slow damage to us if we’re always in a heightened state of anxiety. It’s natural, it’s to be expected, but we don’t need to be so anxious when we’re not in imminent danger.
I note that you have youth in your favour and it’s worth remembering that we’re considered adolescents until our mid-20s while our brains are still forming. Now is the time to slow down that anxious thinking and practice not letting it take over. You’re clearly well-read and able to parse complex medical information. Some of the energy spent on anxious thinking could be put towards practicing regulating your breathing and slowing down the racing thoughts.
Looking through your posts I couldn’t see where the diagnosis of Myelodysplastic syndrome (MDS) came from. Is it something a doctor mentioned years ago? Is it a self-diagnosis? I realised I likely had Polycythaemia vera (PV) after getting a blood test result come back confirming a gene mutation that usually indicates my type of blood cancer. The bone marrow biopsy I had added another level of confirmation, but they aren’t always needed for diagnoses. If you don’t have symptoms, gene mutations, or blood cell numbers indicating a blood cancer, it might be worth trying to trust the test results as they don’t have biases like us humans! I find my regular blood test results weirdly reassuring as they literally measure what’s in my blood. Perhaps you could locate something unbiased in your test results that you can build trust up from.
I just wanted to say I’m really sorry that you lost your dad, and at such a young age. I lost a parent when I was young too and it’s a Big Deal, no matter how much time has passed or expectations to get over it sooner or whatever. Others often don’t know what to say or do when confronted with such a pivotal loss. Tolerating the death of someone so formative whilst also experiencing health concerns is quite the double-whammy. Please don’t underestimate how massively grief can affect all sorts of stuff, sometimes seemingly totally unrelated. It can be like a slow-moving dark cloud over everything, or a sudden burst of loss at inopportune moments, so the worry about health and grief can get all mixed up together into a nasty worrying mess. Sounds like you need a good hug and a keen listening ear and I wish things were easier for you!
My final advice would be to find someone you trust to share this all with and have them attend appointments with you. During my Polycythaemia vera (PV) diagnosis appointment I was pretty zoned out with anxiety and my spouse was with me taking notes. Having others to share your concerns with can really help ground you in these understandably heightened states of worry. Anxiety about a diagnosis that confusingly doesn’t quite match symptoms and blood readings and so on can feel less overwhelming when shared. As they say, a problem shared is a problem halved. You say you have Christian faith, and I wonder if you have folks at church to support you? I understand that religion and science don’t always mix so well, but perhaps you can find some relief in your shared beliefs with others?
Thinking of you @SarahD1702. Remember you’re not alone and can always come here for support.
I was very lucky today and my MCV has decreased and is now in the upper normal range again. B12 supps? I am not sure. My white blood cell is the only count that is off now, but at least stable for 5 years.