Take 2 - I wrote this and went to publish and it crashed...
... I lost it all even though it is set to autosave and I'm not amused!
This really sums up my life right now!...
This was meant to be the final blog post for sickle cell awareness month, but after listening to lots of people around me, I took a break, ish (I wrote the bones for this while waiting for Arlo Parks to perform at the Hammersmith Apollo).
So instead, this is a blog post as part of Black History Month as it is now October!
Let's talk stress (emotional, work and physical) and the impact it can have on those of us with chronic conditions... I've signed up to be a disability champion at work as i think it is so important especially in a role where education is involved as improving access and breaking down barriers can totally revolutionise an individual's success.
You see, if we look at the social model of disability, it highlights that our impairments aren't what make us disabled, it is the social barriers and stigmas etc which prevent us from living/achieving/developing/living life in the way we would choose if we could. At home, where I control the conditions and what I need, my impairments rarely cause me an issue. However, when a friend who uses a wheelchair comes to my house, which is built in the standard way, raised/narrow front door, staircase up to the bathroom... These create barriers and so my friend's impairments become disabilities...
I'm in no way an expert when it comes to chronic health conditions, disability or advocacy, but I am passionate about true inclusion, interested in how to improve things for people and how to prevent the preventable happening. The preventable happens because people assume we are all homogenised version of us, or we neglect to consider how it might be for anyone else... whether this be policy writing, planning for buildings, street planning (the list goes on), if we don't have a myriad of differing voices, with differing experiences then we are just continuing with the binary. And honestly, no matter how much we want to believe we are all the same, that's impossible even if we take inclusiveness out of the conversation.
So, with that in mind, let's look at stress (and yes, we all experience stress in one way or another as there are a myriad of stressors around us every day) and how for sickle cell warriors (and for others who have chronic conditions) this can manifest in ways that can significantly impact on our health.
Let's start with some stats;
7.5% of all absences in a 2021 research journal article were attributed to stress/depression/anxiety.
Absence due to stress/depression/anxiety by type of chronic health condition:
- Chronic health condition/any physical health condition - 6.8% (I thought it would be higher than this but when you look at all of the options, I reckon people have picked other and more primary issues before identifying stress and anxiety?)
- Any mental health condition - 28.8 (%) [1]
When I'm emotionally stressed, (usually caused by sadness and disappointments involving important people and loved ones in my life), my immune response goes haywire, my autonomic nervous system has a mind of its own meaning I'm more prove to infections, accidents, increased blood pressure and heart rate. I often get a myriad of random symptoms that at their peak honestly, make me panic (health anxiety spikes and does not help the symptoms) and feel like I'm dying!
This isn't hyperbole, and it genuinely makes me freak out a little (especially as the only adult in the household). For reference, I taught the mini me how to call for an ambulance on my mobile and on the house phone from 18 months old (in case he ever found me struggling for breath, unconscious or in so much pain I was unable to fully respond to direct questions asked).
With work stress, I have an increase in headaches/migraines, my processing speed significantly slows down and my sleep becomes worse (even more so - if that's possible as a chronic insomniac). This all impacts my ability to control my pain levels, especially the chronic/fibro type pain and I don't stop adjusting and moving. With sickle cell, constant pain can trigger pain full episodes known as vaso-occlusive crises (VOCs).
VOCs - occur when the smaller blood vessels become obstructed by the irregular sickle shaped red blood cells, causing ischemic (a condition in which blood flow and therefore oxygen is restricted or reduced in a part of the body) injury/death to the organ, bone, tissue supplied and can resultant in excruciating pain.
I can only talk about my experience and what happens for me (more complex as I have multiple chronic conditions) because sickle cell is definitely NOT one homoginised group. It is group of disorders and a basic example of this is the rhetoric that HbSC is the "less serve form of sickle cell'... 😤
(trust me there is a reason for this preamble!)
With my HbSC, I experience:
1. joint issues and I'm prone to avascular necrosis - the temporary or permanent loss of blood supply to the bone.
More information about this in "Hip Op" blog post
2. retinopathy - blockage of blood vessels in and around the retina and choroid, as a result, abnormal blood vessel grow as the body tries to increase the amount of oxygen/blood supplied. This can cause thinning of the retina, the blood vessels can pop due to being small and spindly and the pressure in the eye. These physical changes and their consequences can impair vision and can cause blindness.
More information about this in "Visual Tombola" insta blog post
These are more common, but that doesn't mean people with HbSC do not suffer from increased risks of strokes, heart conditions, kidney, liver, and spleen damage like our HbSS counterparts.
HbSC constitutes about a third of SCD cases, making this the second most common form of SCD and therefore representing a clinical problem of considerable impact. Although HbSC disease is common it is neglected compared to other haemoglobinopathies, such as HbSS and the thalassaemias. Relatively few studies are conducted on HbSC disease, and most physiological and clinical features are inferred from studies of HbSS. [2]
(Full circle comedy style moment incoming)
One key part of the Disability Champion training was discussing the possible signs of distress, anxiety and depression in those coming to us for help and advice but also, recognising it within ourselves. We all know the the adage, look after yourself so you can look after other... ... ... but how many of us take a moment to check in?
I know I don't. I run around at 100mph all the time and rarely have a moment to reflect, check in or hold myself to account. When you are a person who gives a lot, or you are a naturally empathic person or you have a job where you care for others, it becomes hard to take enough time for yourself.
I have some real tell-tell signs that I am on the verge of of a depression/anxiety relapse and despite knowing these signs, relapse can sneak up on me very quickly.
Tell-Tell signs:
- Self care goes out of the window
- Withdrawing and isolation
- Negative self talk (out loud)
- Self-blaming and becoming even more self-critical than usual
- I can't retain any information for more than 2 seconds
- I start to over-explain everything
- I overwork
- I decrease the amount of time doing physical activity and being outside
- I start catastrophising
- I fall into the doom spiralling trap
I was recently at the East of England International Recruitment celebration and leadership event, which was honestly fabulous with amazing keynote speakers. During talks about compassionate and inclusive leadership, there were messages reinforced to us around self care and compassion in order to be good compassionate and inclusive leaders. Thank you Professor Michael West and Rachael Moses for reiterating the importance of these.
Self-compassion - how we recover from stress
- Detachment
- Relaxation
- Mastery - achievement from challenging tasks
- Control - what to do when in non-work time
Examples;
- Work breaks
- Holidays
- Exercise/physical activity
- Natural environments
Inverse recovery law - those who have the most stressful work/jobs are least likely to do the recovery activities
My ways to recover are;
- Mastery - I crochet and paint (I cannot draw or paint to save my life so having to focus so hard really helps me to detach and relax)
- Reconnecting - spending time with loved ones
- Exercise
- Accountability - is huge for me so thank you to those who bring me down when I spiral or over work and encourage me to do things.
References
[1] The effect of mental and physical health problems on sickness absence - 2021 Eur J Health Econ.
[2] Haemoglobin C Promotes Distinct Membrane Properties in Heterozygous HbSC red Cells - 2015 EBioMedicine.
