Tuesday 22 September 2015

INVISIBLE ILLNESS: My Invisible Fight

Imagine having an Invisible Illness. Imagine having an illness that is unable to be seen. That is ‘Out of Sight’, ‘Hidden’ and ‘Not Visible’. Imagine having an Invisible Pain. Imagine a pain that is SO real, and SO terrible, and SO all-consuming that you feel entirely wretched and miserable and distressed. BUT, that this is a pretty big BUT, a pretty gigantic BUT actually … BUT … nobody can see your illness, your pain. It is in fact, Invisible.


Imagine that you experience Fatigue. You experience a tiredness that is like nothing you ever imagined. You feel weak and you feel exhausted. Both your mind and your body. You have no motivation. You have no enthusiasm. You have no motivation and no enthusiasm for anything. Nothing.



Because they can’t be seen, it makes it difficult for people to understand or empathise.



The invisible nature of the invisible illness or the invisible symptoms of the invisible illness means that the sufferer, or the individual who is living with the symptoms may find it hard to explain their symptoms as they can’t be seen they are not visible and therefore the general public are left largely unaware.  Imagine that.



When we talk about Invisible Illnesses we are talking about conditions like:

  • Lupus
  • Irritable Bowel Syndrome (IBS)
  • Fibromyalgia
  • Rheumatoid Arthritis
  • Multiple Sclerosis (MS)
  • Myalgic Encephalopathy (ME)
  • Chronic Fatigue Syndrome (CFS)

It is important to remember that Invisible Illnesses can be physical and mental, so they also refer to Mental Health conditions like:

  • Depression
  • Stress
  • Worry / Anxiety 
  • Post Traumatic Stress Disorder (PTSD)
  • Bi-Polar

People who have an Invisible Illnesses, whether physical or mental, feel guilty because no-one can see or understand their illness. If you have an Invisible Illness you might feel guilty despite the fact that you have done nothing wrong. You feel guilty for having an illness, a Chronic Condition.  Guilt therefore is another silent and invisible side-effect of living with a Chronic Illness.



There is the guilt of feeling like a burden to others, that you are a disappointment.  Chronic Illness deprives you or can deprive you of your independence in many ways, and this then eats away at your self-esteem, which has most likely already taken quite a pounding, reinforcing the fear that you are a disappointment.  You are constantly haunted by that nagging doubt that frightful, distressing fear that you are not ‘Good Enough’, all of which is reinforced by the fact that you look ‘Fine’, that you look ‘OK’, better than OK, you probably look ‘good’.  You don’t feel ‘Good Enough’ and therefore you don’t feel that you deserve to be loved or valued or supported. This is really a frightful cycle to get caught in.



And as if all that isn’t bad enough, you have a strong sense of fear. Fear that people won’t believe you.  Fear that people don’t believe you. Fear that your condition will get worse, and the speed that that deterioration may happen at. You are scared. You are terribly terribly scared. And in your fear and guilt and pain and fatigue you feel lonely. Because even people who have the same chronic condition as you experience it, or may experience it is an entirely different way. You are ultimately the only person who knows and understands how you feel.



Quite often these Invisible Illnesses are not life-threatening, but they certainly can be Chronic Conditions, which can definitely and drastically affect the quality of life. These conditions can be 24/7 365 days a year.



This year Invisible Illness Awareness Week is being held from 29.09.15 until 04.10.15 with the intention being to raise awareness regarding Invisible Illnesses, encouraging people to BLOG about and share their experiences. www.invisableillness.com Please help as much as you can to raise awareness.

8 comments:

  1. This is a really moving post Hanya. Thanks for being brave and sharing your personal worries and feelings in order to raise awareness for Invisible Illness Week :) It is very informative for people who may not be familiar with the term Invisible Illness x

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    1. Thanks You for taking the time to have a read and to leave a comment. We may have different conditions, but we are 'all in this together'. Your understanding, support and compassion are all very much appreciated.

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  2. A very well written and informative article Hanya

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    1. Thank You for taking the time and trouble to read and comment John. Much appreciated x

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  3. Great post! I have been having discussions with London Underground about introducing a badge for people with invisible illnesses to wear, like the 'Baby on Board' badges for pregnant women, to make it easier to ask for a seat. It is so hard, looking fine but feeling terrible!

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    1. Great Project. Do keep me posted if it get's going. All the Best x

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  4. A very clear-eyed and unsparing insight into a terrible, private agony. You have the gift of being able to articulate with insight and accuracy something that must be very hard to put into words. Much love as always to you dearest Hanya X

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