Estimated reading time: 9 minutes
In Memory of Rachael Jarvis
As I’m sure you are all aware, the life of a healthcare student/professional is never smooth or easy-going. It is a journey of ups and downs, laughter and tears, anger and humbleness. So throw a chronic illness into the mix and things do get a little bit more complicated.
Rachael and I both studied Adult Nursing at City University of London. Upon graduating, Rachael went into A&E and now community whilst I worked clinically for a while and then went on to pursue Physician Associate studies.
So what is it like?
Difficult. It was very difficult.
Rachael and I have Sickle Cell Disease (SCD). This is a condition which is inherited and affects the red bloods cells in the body. The red blood cells have a tendency to go out of shape – this can have a known or unknown trigger to do so – and become sickle-shaped.
This can cause a wide variety of issues because these sickle cells are harder and less flexible than normal red blood cells which means they can get stuck in small blood vessels and block them. This causes what is called a sickle cell crisis which causes absolute severe pain. You can experience this pain anywhere in your body. I mostly experience it in my legs and my back.
Managing SCD is a rollercoaster and it affects a person in many different ways. This might get confusing but it is important so bear with me:
There are a few different sickle variants (genotypes) however the most common variants (genotypes) are HbSS and HbSC. So this actually makes a difference in clinical severity. For example Rachael has HbSS which is considered severe, whereas I have HbSC which is considered of an intermediate severity. So this means we have both had very different experiences of managing our illness and how it has affected both of us is very different. For example Rachael has been admitted into hospital many times however I only see a hospital bed maybe once a year as I manage my SCD complications at home.
It is apparent to say that we both had a very up and down journey. There was stresses, tears, difficulties and challenges during many clinical placements. There were times where the worries of whether we were going to complete a placement was so big due to being ill; stressing to get the hours we needed to get. But the fact that we are in the positions we are in now, means we made it! And it means you can too or anyone that you know, that is managing a chronic illness whilst working, can do it!
But to the main part – below I’ve collated both our advice and tips on managing a chronic illness in high intensity environment which is healthcare.
You may be student, a healthcare professional or you may be neither. However if you know someone with a chronic illness these principles apply all the same
Recognise when you are not well
At the first sign of infection or decline in your health condition, call your GP because they may be able to help manage your condition in the community and that way you can continue working, depending on how you may feel. It is also good to seek help/support on the team that manages your health as well. On certain placements, I would start to feel a sickle cell crisis coming on and it was so important for me to recognise when it was happening and be able to act in the way I needed to. Being on placements it was so difficult because I didn’t want to compromise my hours by having to leave early. It sounds ridiculous because you’re ill right? But when you want to complete your hours so badly, you just want to push through the pain. However it is important to seek help and support.
Open up to your mentors/managers
Opening up to your mentor/manager is a personal choice. Rachael personally opened up based on whether or not she felt comfortable enough with her mentor/manager and whether or not they would support her. Whereas for me, I was very willing to make known that I had Sickle cell as soon as I started a placement and when I started working. Now either avenue, like I said, is a personal option however I believe it is important that you confide in someone you can trust. It is helpful to have a person that knows what you are going through and can help you when illness relapses and you experience difficulties.
Maintain your hydration!!!!
Specifically from a clinical point of view when you are on your feet constantly running around like a headless chicken, keep the water flowing. One time, I didn’t follow this advice and I collapsed in the middle of a 12 hour shift. Thankfully my mentor let me nap in the break room the rest of the shift.
Planning early + starting early
Rachael and I can both agree that we aimed to start our essays and coursework as early as we could because we could have a sickle cell crisis whenever and then it would become a problem. We gave ourselves as much time as possible to complete work.
Rachael expresses that there were many times that she would take her work into hospital when she was sick to try and get some done. However when I had a Sickle cell crisis, I managed my pain at home but even then, I would not at all be in the right frame of mind to do work so preparing in advance was key.
Don’t compare yourself!
It can be so easy to beat yourself up and compare yourself to the journey that others are on. Managing a chronic illness is a unique situation and working in a high stress environment that is healthcare is hard enough so adding an illness into the mix is a lot! So don’t compare yourself to others because everybody else is experiencing their own journey and navigating their own ups and downs. It is key that if you are managing a chronic illness whilst studying or working clinically that you focus on what you need to put in place to maintain your own physical and mental wellbeing.
RELAX and protect your mental health.
Stress is never good for anyone and if you are managing a serious chronic illness then stress is really not good at all. Rachael and I have both experienced that stress can be a major trigger to having a sickle cell crisis and for me especially, it is my main trigger. We have both been told by our consultant haematologists many a time that stress is not good for us and having something that can relax you anytime we feel stressed out, is important.
For me reading, opening up to loved ones, writing on my blog and praying, amongst other things, helped me to wind down after those long 12 hour shifts and protect my mental health. And this is something I can’t stress enough. Healthcare is an emotional rollercoaster. You can be faced one day with the worst patients, horrible colleagues and heartbreaking moments whereas another day it is all rainbows and lollipops. This makes for a very emotionally draining experience!
My third year of Nursing, I had a placement during a time where the snow in the UK was very rampant. Cold weather is another trigger for sickle cell crises therefore, I was having sickle cell crises back to back. Even though it was my last year, I just felt fed up and there were many times I was in a consistent low mood.
It is so important to find your solace in something else that is healthy and that can help you process all these experiences. Lean on trusted friends and family members and try to express how you’re feeling and how you’re coping.
The same applies if you don’t work in healthcare. It is tempestuous to compartmentalise and shove things under a carpet – but don’t do it.
Reflect on what happens and move on.
For me that also meant taking my burdens to God in prayer and trusting that He will see me through to the end.
I have amazing friends and family who were supportive and always checked up on me to see how I was doing and coping and it is so important to have that support system. Even now, I’m so appreciative for my friends who have helped me deal with difficulties and anxieties I have faced.
“Find your solace in something else that is healthy and that can help you process all these experiences.“
The fact that Rachael and I are here today walking on our different paths is a testimony in itself. I remember finishing my last ever placement, standing outside the gates of the hospital and just saying to myself, “God, we made it.” I just couldn’t believe I had made it through and I never would’ve made it if it wasn’t for God’s grace.
I believe the same grace will continue to carry me through.
Thank you for reading,
Check out the Q&A below from some questions I got on my instagram!
- If two people are carriers of sickle cell disease, what’s the likelihood of their child having it?
If both parents have the trait this means that there is a 1/4 chance (25% chance) that one will have sickle cell disease. So in my family there’s four of us and I was that 1/4 possibility!
2. What are some of the things that we have to limit in social settings?
Well, personally I haven’t had to limit much in my social settings. I don’t drink alcohol as this exacerbates my sickle cell attacks. I get tired very easily so when I do go out I’m very much eager to not spend a long time out or I limit the time that I spend out socially because I just get too lethargic. When I was younger I didn’t do any swimming or high intensity exercise as this was another thing that exacerbated my symptoms. People with HbSS will have their social life impacted way way more. You can read more on some other people’s stories and experiences with Sickle Cell Disease. I found this very touching and highly recommend you check this page out https://www.cdc.gov/ncbddd/sicklecell/stories.html
3. How has Sickle Cell Anaemia impacted me growing up?
It impacted me quite a bit especially socially and emotionally. I felt very isolated and misunderstood at times and like no one could really understand what I was going through. However I quickly became more confident in myself due to my faith and the true friends I made. I have friends who have enabled me to come out of that shy shell I was in and it has allowed me to embrace who I truly am in Christ. It has been very emotional and frustrating at times and I tell you now, I’ve had it better than some others have had but I’m grateful for the position I am in.