LESSONS LEARNT FROM BEING DIAGNOSED WITH AN INVISIBLE CHRONIC ILLNESS:
29/05/2020
I received my Crohn’s disease diagnosis in May 2016, after experiencing months of extreme physical pain, emotional exhaustion & mental confusion (I was NOT having a good year!). Prior to this, as one should be in their 20’s, I was relatively carefree & quite active. Almost overnight, that healthy energetic person disappeared. Her place taken by someone scared & embarrassed. Suddenly, I wasn’t spending my free time with friends or at the gym, but sat in hospital waiting rooms surrounded by distressed strangers. I was being prescribed various medications with unpronounceable titles & terrifying side effects, & was expected to immediately begin taking these – no questions asked.
Fast forward to today, those dark times are luckily behind me (for now at least!). I am still popping pills on a daily basis – but have learnt to pronounce these by now! I also have to inject myself with a really scary drug fortnightly, avoid certain foods, & accept that my body will no longer allow me to be as active as I would like to be. I still get bouts of feeling very afraid of what the future may hold. BUT, things do not feel as bleak as they did back then. And I have definitely enjoyed holidays, night-outs, long walks & a cocktail or two in the recent years, so no need to feel too bad for me!
There have been three major life lessons my ongoing Crohn’s journey has taught me so far:
LESSON (1) ---> ‘DON’T JUDGE A BOOK BY IT’S COVER!’
So many life-changing & chronic physical health issues are entirely invisible to the naked eye. Crohn’s, colitis, diabetes, epilepsy, fibromyalgia, asthma, migraines, food allergies, multiple sclerosis, to name a few. Need I highlight the obvious? Mental health issues are almost always invisible too. Depression, PTSD, OCD, social anxiety, personality disorders, post-natal depression, the list could go on & on. It’s so important to remember: ‘not every disability is visible!’
It still impacts me to this day how some people look at me when I’m being instructed to walk through for a blood test as a priority, or when I’m stood in front of them in the pharmacy queue. I am only presuming of course, but it does often seem like they are thinking ‘Why is she going first? She looks fine, I’m clearly more sick than she is.’ Why on earth am I made to feel like I am doing something wrong, just because I am not visibly unwell!? (Saying that, I could also be getting funny looks because of my daunting Greek surname, who knows?!)
My point is, be considerate & don’t judge people. The very same person who has just posted that gorgeous selfie on social media, may have been overcome with pure desperation just minutes later. The ‘rude’ person getting on the train may be experiencing an intense panic attack. That friend that keeps turning up unannounced may be in desperate need of distraction from their physical or mental health worries. The driver behind you that honked his horn the second the traffic lights turned green, may be on his way to a life-changing hospital appointment, or in desperate need of the loo!
So please be kind! We never really know what someone is going through.
LESSON (2) ----> THE ‘SPOON THEORY’
Any of my clients reading this will know all about the famous ‘spoon theory’ from me waffling on about it during sessions. For anyone that hasn’t heard of this before, the ‘spoon theory’ suggests that healthy people have unlimited ‘spoonfuls’ of energy/effort/ability each day, however people with an illness or those going through some form of trauma, do not. Therefore these must use their numbered ‘spoons’ wisely as to avoid ‘burn-out’. As someone with an invisible illness, I thought I’d benefit from a personal reminder that some days are going to be harder than others, & so chose to get a spoon tattooed on my forearm!
I’m not suggesting you all get tattoos, don’t panic! I am however suggesting that you show yourself compassion when going through a challenging chapter. For example, if you are struggling with low mood at present or physical pain, it is literally impossible for you to be as productive as usual. So instead of piling more & more on your to-do list & feeling terrible for ‘failing’ at these ‘simple’ tasks, why not remove some items instead? Spend your precious spoons on the tasks that will benefit you here & now. In practical terms, if you feel you have 3 spoons today, you will not be able to use 10! It really is as simple as that. So adjust your to do-lists accordingly.
Tomorrow is another day, give yourself time!
LESSON 3) ---> ‘GRIEF IS A ROLLER-COASTER!’
What has grief got to do with illness? Well…everything!
There is a great & complex amount of loss that comes with illness. You are no longer the same person once you fall ill, especially if this illness is chronic. You can lose the ability to do certain things or go certain places. You can lose precious time at medical appointments or sorting through medications. You can lose touch with individuals that don’t seem to understand the magnitude of what has happened to you. You can lose faith. You can lose hope. You can lose independence. You can lose confidence. So OF COURSE you are going to be grieving!
The main theory around loss suggests that there are seven different stages of grief (feel free to explore further in your own time, it really is interesting). These are:
1) Shock
2) Denial
3) Anger
4) Bargaining
5) Depression
6) Testing
7) Acceptance
As promising as the final stage seems, unfortunately bereavement is an ongoing process & definitely not linear. What this means is, once you reach ‘acceptance’, you don’t necessarily stay there. It is also worth mentioning that each & every individual experiences grief in their own unique way, & that external factors can massively impact this too. No wonder bereavement is such a complicated process!
What does all this mean? Well it means, if you have lost something, it is OK to feel angry about it. If you have been made redundant at work, it’s OK to not throw yourself into job applications & interviews the very next day. If a loved one has passed away, it’s OK to feel low about it 3 years later, or 5, or 10!
Allow yourself to feel whatever it is you are feeling. It’s OK!
