Emotions surrounding chronic illnessInvisible Illness Awareness Week 2010Invisible illness realityLisa J. CopenLiving with chronic illnessThe importance of encouragement
The Reality Of Invisible Chronic Illness
For the last four years I have been living with persistent chronic pain. I live with the debilitating and painful symptoms of fibromyalgia, endometriosis, chronic fatigue and polyarthritis. I spend every day in chronic widespread pain. This is my reality and one that I have struggled to accept. I am not the only one who has had to face this reality of chronic pain. I, along with 1 in 5 Australians and millions world wide fight a constant struggle against aches, pains and chronic fatigue.
Having a chronic illness can disrupt your life in so many different and unimaginable ways- that is an undisputable fact. Managing one illness, let alone multiple, is a full time job. It is an enormous time consuming and energy draining exhausting task. Sometimes for me, my biggest achievement of the day simply lies in the fact that I managed to get out of bed and get dressed. Illness is an emotionally draining experience, having implications on a persons self esteem and their sense of belonging and feeling productive within society.
Living with an invisible illness brings many challenges, one of the most major and destructive challenges being that of social isolation. For many, illness is isolating. Most are forced to withdraw from social contact because of inability to maintain employment, limitations in mobility and the need for extra rest. Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. Feelings of despair, isolation, helplessness, lack of control and the fact that the disease cannot be cured is an everyday struggle which may lead to suicide. Does this not shock you? This is a sad reality and one which needs to be addressed but how do we change this statistic? Our society does not deal with disease well enough. Peoples inability to acknowledge hidden disabilities can lead to a feeling of isolation and the mention of a chronic illness can be terrifying to some people. I'm lucky to get a call every six months from my church to ask "hey, where are you?" and when I state my reasons for my lack of attendance I receive in reply "oh, ok then, bye" like it meant nothing to them. It makes me feel like I don't matter, that they only care about me if I am able to rock up to church events like "true" Christians do. Although they don't intentionally mean to come across that way, to a chronically ill person that's how it comes across and that too is a reality that needs to be addressed. I realised something though, most people are not equipped with knowledge when it comes to dealing with unseen pain, they are not expecting to hear " I feel terrible, everything hurts" when they see a perfectly healthy looking person standing before them. Chronic pain is a REAL reality though, so why are we not equipped to encourage the chronically ill?
There are many reasons for this. People often shy away because they don't know how to to offer help, they don't know what to say or they assume that because a person looks and appears fine, therefore they are. How can we change this? Knowledge is power. Knowing that we don't need to understand another persons pain to show them compassion and bring them comfort is vital. The simple act of a hug, a warm smile, a shoulder to cry on, a listening ear or a kind word is enough. If you are friends with a chronically ill person, mean it when you ask them how they are. Follow through when you tell them you'll have them around for dinner. Call them and share a laugh. It doesn't take much. Big hearts come in small packages. Care enough to be informed and if you don't know what to do a great resource that is available to help you is Lisa Copen's Beyond casseroles: 505 ways to encourage a chronically ill friend.
Many times I've had people say to me "you must have so much support" and yes, I do have some great support from family and friends at times- but I have much less than what people think and this is reality for many of those living in chronic pain. It seems that everyone just assumes that people who live with chronic conditions are showered with support when in reality they are receiving much less than what people perceive to be the case. Yes, on a good day (these are very rare) I many hang out with friends and have a good time but at the end of the day I go home and I am forced to face my unwanted reality- the reality that I am no longer the person I used to be; I now live a restricted life full of limitations, the reality that as much as I wish it were not so, I will wake up with pain the next morning. I am left alone with my thoughts. I don't want to be alone but sometimes it is necessary; there is no one that I call when I'm upset- who wants to hear you crying hysterically because you ache all over, no one wants to hear about pain. What happy and healthy twenty two year old can appreciate what I am going through? Everyone is sick and tired of hearing about how much I ache or how tired I feel, even I am!Living in chronic pain can be incredibly lonely at times. Comments like "but you look great" or "you'll feel better if you do things and just get out more" lead to feelings of isolation and the belief that no one understands. In an e-book resource chronic illness tips- 263 ways to do more than just get by, Lisa Copen shares "if one more person tells me to go have a cup of tea- I am going to scream! Tea is not going to help, people! I am tired of tea! My illness is bigger than tea! Don't you get it?" the reality is most people don't. I've lost count of how many times I've been asked "are you feeling better?" and I feel like screaming "what part of CHRONIC don't you understand?". The reality is that my pain as much as I would like it to, isn't going to disappear over night. A magical genie isn't going to pop out of a bottle and grant me my wish of a life without pain and *poof* I'm all better. It is a constant pain- 24 hours a day, 7 days a week, 365 days a year, and most people cannot relate to being in pain all the time- that is reality.
The true reality though, is that I am not alone in my daily struggle with pain and isolation. I go to sleep knowing that even though I may feel alone, there are millions world wide who are crying themselves to sleep too because of fear that they are disappearing without anyone noticing; there are people who care and there are people who share my reality of invisible chronic illness and the one thing that unites us all- our invisible pain leads us to visible hope.
© Emily Ruth 2010
Sources:
Australian Institute of Health and Wellfare Australian General Practice Statistics and Classification Centre. 2005-2006
Resources:
Lisa Copen's chronic illness tips- 263 ways to do more than just get by is a free e-book available to download when you sign up for daily updates. Visit www.invisibleillness.com
Lisa Copen's book, beyond casseroles: 505 ways to encourage a chronically ill friend can be purchased at http://chronicillnessbooks.com/index.php?cPath=29
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