Good morning everybody. Today I wanted to share a post about how a chronic illness diagnosis can affect you. I was diagnosed with rheumatoid arthritis aged 15 months, so have never known any different but my diagnosis with Crohn’s Disease came when I was 26. I found this was handled very badly by my gastro team at the time. I am now passionate about helping others who have been diagnosed with chronic illness, particularly with their mental health, which is very much ignored for the most part I have found.
At the IA Information Day in March I listened to an interesting speech by Shell Lawes of Stoma In A Teacup. She mentioned about the 5 stages of grief and how these can relate to people when they are diagnosed with a chronic illness. This really got me thinking and I decided to do some looking into it for my own blog post. I hope you find this useful, whether it is something you can identify with, or whether it helps you understand what a loved one is going through when they are diagnosed. Because mental health is not often addressed alongside the physical symptoms of a disease, people can struggle with things like depression and anxiety. I hope this gives you a good insight into how you can work through this period of mourning for the ‘old you’.
What Are The Five Stages Of Grief?
The five stages of grief were introduced in 1969 by Swiss-American psychiatrist Elisabeth Kübler-Ross. It was inspired by her work with terminally ill patients. The five stages are
She later redefined the model to include two more stages. She added in ‘shock’ at the beginning and ”testing’ before the final stage of ‘acceptance’.
How Do The Stages Relate To Chronic Illness?
So although this model was built on Kübler-Ross’s work with he terminally ill, the stages can also be applied to those who are chronically ill. Being diagnosed with something you are told will affect you for the rest of your life is very daunting. Knowing you are sick and are never going to get better can be a horrifying thought to come to terms with.
Here are how each stage can relate to someone with a chronic illness, and how these stages might manifest
- DENIAL – A common feeling after diagnosis is shock. You might think ‘this isn’t happening to me‘, feel numb and overwhelmed at the same time. Your defence mechanism is triggered and you may withdraw.
When I was diagnosed with Crohn’s Disease I was in shock and total denial. I pretended it wasn’t happening and ignored it. This led to me becoming more and more unwell, both with my disease and my mental healthNatalie, The Spoonie Mummy
- ANGER – The anger stage is often directed towards a higher power or life in general. You feel frustrated and helpless. You are faced with the pain of your diagnosis and feel like you are losing control.
- BARGAINING – You dwell on what caused your disease and what you could have done differently to prevent it. You dwell on ‘what if…’ and ‘if only…’ thoughts. You may try to strike a deal with a higher power.
I often find myself revisiting this stage. On a recent hospital admission I found myself thinking – ‘I promise to never miss any hospital appointments or doses of medication if I can just get out of here and be ok again‘.Natalie – The Spoonie Mummy
- DEPRESSION – Sadness sets in. You feel overwhelmed, lonely and regretful. Signs of depression include trouble sleeping, crying, change in appetite etc. Bouts of depression are very common in people with chronic illnesses.
- ACCEPTANCE – You come to understand that your diagnosis can’t be changed but you have to move forward with your life.
Getting ‘Stuck’ In A Stage
Grief isn’t linear and Kübler-Ross actually addressed this later on, saying she regretted writing the stages in a way that seems like it should be a progression. Not everyone will pass through every stage, or you may not pass through them in order. I find that with people who are chronically ill, they may pass through the stages at regular intervals – possibly every time they have a flare or get admitted to hospital for example.
So what should you do if you feel trapped and can’t get to a level of acceptance so you can keep moving forward? My advice would be to speak with your GP and maybe look into some talking therapy. You may be prescribed anti-depressants or do a combination of the two (as I do and always suggest).
One point I would like people to remember is to make sure you give yourself time. You are mourning a huge loss. So much of your life may have to change – your job, plans for a family, study plans etc. This will take time to overcome and many people need help with it. Looking to support groups can be a really good thing too. Meeting people going through similar experiences can really help. Remember – chronic illness does not necessarily mean an end to all your hopes and dreams. As my tagline says – life can still be happy and meaningful with chronic illness. Goals might have to change or they may take a little longer to achieve, but you can still be extremely successful and content in life.
Chronic illness has definitely changed my life. I had to drop out of college when I was younger, but here I am 15 years later, studying for a degree and working towards a profession I feel so passionate about. I have two beautiful children, an amazing relationship and have met some wonderful people. I won’t sit here and say it is easy, but if you can work through it and gain some sense of acceptance, your life can be just as fulfilling and you will be much more happy and at peace.
As always, my inbox is open for anybody who wants to chat. I would also love to hear your thoughts on this and if you can identify with it in the comments below,