Rediscovering My Self-Worth Alongside Chronic Illness

Today, Astriid candidate Lou shares her journey of rediscovering her self-worth and addressing her work-life balance alongside managing chronic illnesses and awaiting a vital transplant. Keep reading to find out more about her story!

In May 2019, I was diagnosed with two rare conditions: essential thrombocythaemia (ET) and Budd-Chiari syndrome. ET is a chronic myeloproliferative neoplasm, a type of blood cancer that causes me to produce too many platelets, so my blood clots easily and will see me taking chemotherapy drugs every day to keep it in check. Budd-Chiari syndrome is a very rare condition caused by a blood clot in the liver. It stops blood flow, leading to scarring and, if not caught quickly enough, liver failure.

I’ve gone from having a great job in communications to being signed off as medically unfit to work. The emotional and financial impact this had on me has been tough.  My diagnosis filled me with the fear of the unknown, but I’ve learned the support is out there if you open up and embrace it.

Baby Steps

In the initial hurricane of diagnosis, I learned from the NHS counselling team that my revolving emotions were a grieving process that everyone went through. One minute I was happy and the next in despair. Fortunately, I managed to find a new job that helped me to hold onto the feeling that maybe, just maybe, everything might be okay.

But life isn’t straightforward when you have a chronic illness. Just as I felt I was getting my life back, my condition took a turn for the worse – I was told that a liver transplant was my only hope. I have been waiting for a transplant since 2021, and ever since then have been certified as medically unfit to work.

About to turn 50 and having no idea when the transplant might happen, it certainly hit me hard. For somebody who likes a timeline and certainty, the limbo of the transplant list is not an easy place to find yourself located.

For the second time in three years, I felt vulnerable. I relapsed and wallowed in self-pity – at least 70 percent of the time, the doom demons were never far away. However, I do feel I’m in a better place now to decide where I go next, something that will work for the slightly different version of me that remains. I still have no idea where my life is heading, but I realised that I wouldn’t be able to work it out alone. I had to reach out for support.

A Listening Ear

Luckily for me, I’ve had access to NHS psychologists. They helped me to realise I had to take small, manageable steps to regain my positivity and move forward with a plan.

Although I know I want to work, I am still not sure what I’m capable of. My situation has made me realise I need a better work/life balance. Working out what that means for me in the job market is the next step in my journey.

But perhaps the toughest step so far has been my crippling self-doubt. I cannot stop thinking about what I was able to do before my illness was fully diagnosed and what the new me, at 50, can offer an employer. Having the strength to discuss that has been the biggest, most positive change I’ve made.

The Light At The End Of The Tunnel

Technology has been a cornerstone of my recovery. From day one of my diagnosis, the Internet has been a huge part of that journey. It provided a foundation for rebuilding my confidence; I even volunteered to monitor a forum on one of the sites and wrote content for another. It was a real godsend to feel useful again.

I started to think about how to approach employers when you have a chronic illness. One of my internet searches led me to an article by Life of Pippa – it came at just the right time and gave me ideas on how to start my personal transformation, including where to look for jobs. And that’s how I found Astriid. Reading through the site, it was the first time I felt there was an organisation out there that could help me move on.

I got in touch with the Astriid team and had my first initial chat with candidate coordinator Deborah. She talked me through the different ways the charity could support me, and I chose to talk to a career counsellor. I’m currently working with her for six sessions to take steps towards the work/life balance that I am looking for.

So far I have talked about what I wanted to do with my life, what I felt I could do and what I saw as the obstacles in reaching that point. I realised once again that part of the issue was my lack of self-worth.  After that session I rewatched two TED Talks by Brene Brown on vulnerability and shame. Both talks made me consider my illness and what it has done to my sense of belonging and self-worth. It made me realise the positive impact that opening up and sharing my story with others could offer.

Having the courage to own our story gives us the ability to write our own ending. I feel this sums up where I am now. I am no longer hiding my emotions but sharing my feelings with others. It’s not easy and there’s a long way to go, but I can see there is a way forward.

The Power Of Career Counseling

My Astriid counsellor has made me realise it will still take a huge amount of effort to work out who I am, so that I can turn the page and start this new journey. I still feel angry about my illness, but knowing I can build a life outside of that has improved my mental attitude to cope with whatever happens next. I feel more confident in my ability to work through challenges, and I’ve built a reliable support network who are helping me plan for the future.

Here is what I’ve learnt so far:

  • We are not alone. Finding forums and like-minded people, who truly understood my illness, has made the bad days more bearable.
  • Asking for help is not a weakness. Sharing my vulnerability has been a key component in managing my mental health, and opening up has allowed me to focus on the new me.
  • Focus on controlling the controllable. In the past, I have naturally veered towards worst case scenario. Now, with the help of my Astriid career coach, I am focussing on goals and objectives I can control. I am learning not to be afraid of making a Plan B.

The process has given me a greater sense of positivity than I’ve had in a long time. Thanks to Astriid, I now have the support I need to look inwardly and decide how to live my life. My outlook has changed, and I’ve realised I want more balance so I can prioritise my health.

This support has given me the energy to keep moving forward. It’s not easy to balance health, emotional and financial needs but I am now focused on setting goals, anticipating obstacles and discussing ways to keep positive.

Now, I realise that I own this journey. I am the only one that can determine a future that works for me.  Help is out there, but the first step is to open up and share your fears. Vulnerability is not a weakness. The support I’ve received has given me the strength to believe life is worth living. And best of all, I am starting to feel comfortable being me again!

Thank you so much for sharing your experiences so openly, Lou. If you’re interested in accessing support from Astriid, sign up as a candidate seeking work and our team will be in touch!