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Living With An Invisible Illness 

 May 17, 2020

By  Paul Coghlan

“Nobody realises that some people expend tremendous energy merely to be normal.”

Albert Camus

Appearances Can be Deceiving

Living with a cancer diagnosis varies so much from person to person. Depending on the severity of your illness and your treatment, you can look visibly ill. You may lose weight very quickly. Your skin might lose its healthy color. Your hair may fall out.  All of which are very obvious and noticeable signs to you and others that something has dramatically changed.


In some cases, you may show no obvious or visible signs that you are ill and you could experience what is referred to as a “vertical or invisible illness”. You look the same on the outside and appear healthy. But appearances are deceiving. Your mind is processing the most frightening, shocking and traumatic information it has ever had to deal with. Your body is going through all the symptoms associated with fear and anxiety. How can that be possible when you look exactly the same?


You may be at the beginning of your cancer journey. You may be in the midst of oncology treatment or you may be in remission. Each stage brings its own difficulties and changes that you have to work through. You may have support or you may have to work through these changes on your own. What and how you feel is individual to you, so be patient with others and more importantly with yourself.


The Challenges of Looking Fine

When you look healthier than you feel, it is incredibly challenging and frustrating to continuously hear “you look great”. As much as people may genuinely feel that you look well, it brings an added pressure of feeling obliged to be healthier than you are. It also makes you question yourself and your own abilities.


As “well” as you may look, it is often only after the physical oncology treatment ends that the emotional and mental trauma start to be processed. In addition, the very long journey of recovery that your body and mind need to undergo is also only starting. At this point it can become more and more difficult to still have to ask for help, support and patience as you struggle to feel anywhere close to normal or healthy.


You may struggle with feelings of guilt. Maybe you aren’t trying hard enough. Should you push your body more?  Are people getting fed up of having to help you? You feel guilty for constantly letting people down because you are too tired to do so many things you used to do so easily. Guilt that you have to go to bed early even though you had a nap earlier that day.


It is highly likely that you will face the challenge of justifying what you can do and what you can’t do (mostly to yourself). How can I meet that friend for lunch when I can’t go to work?  How can I go for a short walk with my daughter when I can’t meet my best friend for golf? Will my friend understand that I wasn’t bored by our conversation, I was just exhausted after engaging and concentrating for an hour? 

 

You might feel embarrassed that other cancer patients seem to be recovering so much faster than you. They may return to work before you. They may seem to manage everything without any help at all. Again, the same applies here in that appearances can be deceiving. No-one can ever fully understand the physical, emotional and mental struggles that anyone else faces on a daily basis.


Your Journey and Your Speed

Remind yourself that you are dealing with a serious illness. You are not lazy. You are not unmotivated. You are not a burden.  This is your journey and its pace will be unique and individual to you. Find a pace that works for you and make small improvements regularly. Your recovery may be more of a marathon than a sprint so you need to conserve your energy for doing the things that are important for your physical, mental and emotional health. This is why meeting that friend for coffee or having that short walk are important to do without feeling guilty


Your body is designed to keep you safe and will dictate the pace you need to take and you will know very quickly when you push too hard or do too much. For example, you could feel overwhelming fatigue, you may be unable to remember things you were told or things you need to do. You may struggle to hold a conversation for very long due to poor focus and concentration. All of this is very frustrating and requires LOTS of patience, trust and understanding.


How can you make the invisible visible?

One of the best ways I found was to continue to express how I was feeling through each stage of my illness and to let people know the realities of what I was going through. If you keep everything hidden, those around you may have no idea how you are feeling and everyone is left trying to figure things out alone and in the dark.


Be as open as you can and share how you are feeling with others. Accept that some people may never understand the challenges that you face, unless they end up in a similar situation themselves. 


The challenges still continue for me, but like all the others I have faced and overcome – I know that I will be a better and stronger person because of them. I can look back now and see how both I and my life have changed for the better. So, try to embrace the challenge and all the positives that may arise from this journey.


“The strongest people are not those who show strength in front of the world, but those who fight and win battles that others do not know anything about.”

Jonathan Harnisch

Paul Coghlan


Paul Coghlan is a native of Westport, Co Mayo. He shares the experience of his shock medical diagnosis in 2018. Faced with an appalling prognosis, Paul unearthed character and determination he never knew existed. Paul has always been a keen sports man and credits a great deal of his recovery both mental and physical to his love of sport. He has spoken to sports groups, youth organisations and businesses both in Ireland and abroad. His personality and humour allow him to speak openly and passionately about the lessons he has learnt through his adversity, making him a compelling, memorable and above all inspirational speaker.

Paul Coghlan

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