Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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2016-08-18
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Invisible Illness Awareness Week

Monday, September 26, 2016 @ 8:00 am - Sunday, October 2, 2016 @ 5:00 pm

Invisible Illness week 2016
2016-08-18

INVISIBLE ILLNESS AWARENESS WEEK

 

Invisible Illness week started in 2002 by Lisa Copen who was also the founder of Rest Ministries. Lisa saw so many people with an invisible illness who felt misunderstood by everyone.

 

According to the Invisible Illness website, it says that from 2002 onwards Invisible Illness Awareness Week has gone from just a chat room to podcast conferences on Blog Talk Radio and then last year a video virtual conference.

  Invisible illnesses include conditions such as Complex Regional Pain Syndrome (CRPS) formerly known as Reflex Sympathetic Dystrophy (RSD) along with many other names, Ehler-Danos Syndrome, fibromyalgia, Crohns, CFS/ME, chronic pain, neuropathy and MS to name just a few.  
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WHAT IS AN INVISIBLE ILLNESS?

An invisible illness according to an article by Benton, E. in the Huffington Post (2013) is:
“… where a patient is suffering, despite the fact they may externally appear totally healthy and look well. This false impression often leaves family and friends puzzled, unsure of what to say, how to handle the situation, being unsympathetic and in some circumstances callously doubting there is anything wrong at all.”  
  The general public have probably seen someone get out of their car parked in a disabled car space and thought ‘there doesn’t look anything wrong with them!’ Or you may have seen in the media that some people have even gone as far as putting nasty notes on the person’s car. This is because of the lack of knowledge and lack of public awareness of the large number of Invisible Illnesses. This is what Invisible Illness Awareness week is all about – getting people to recognise that just because somebody looks ok, that doesn’t always mean there’s nothing wrong with them.   On the Molly’s Fund website they have a quote which says:
“Just because I am smiling does not mean that I am not in pain, it just means that I am not letting my disease steal my life.”
 
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HOW TO COPE WITH AN INVISIBLE ILLNESS

Living with invisible illnesses such as CRPS/RSD, fibromyalgia, diabetes, PTSD, anxiety, chronic pain, Rheumatoid Arthritis, CFS/ME, Lupus, Lyme Disease, EDS and other chronic conditions like these can prove very challenging not just to you as the sufferer but to your friends, family and work colleagues. According to Copen, L.  (2011) in her article in the Huffington post, she gives 5 tools to cope with living with an invisible illness, these are:
1. Let Go of Expectations 2. Find Supportive Friends 3. Search for the Joy in your Blessings 4. Use your talents and skills for things you care about 5. Encourage someone else
  In an article by Myers, W. (2013) not only do you have to contend with your own chronic illness which can be a challenge in itself, you also have to:
” …explaining what’s wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you.”
 
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  No doubt you will probably have heard of at least 1 of the phrases below. This is where the stigma and lack of understanding comes in when living with an invisible illness. Whatever you do, don’t ever blame yourself for having a chronic illness – it isn’t your fault. Don’t react to anyone saying things like:
But you look great! You don’t look sick! It’s all in your head You’re not trying hard enough Have you tried this..?  Aren’t you ever going to feel better? You need a better, more positive attitude Why not lose some weight? That may help!
  When you feel let down or disappointed by your family or friend’s reactions to your invisible illness, Bernhard, T. (2011) suggests in her article:
“…. to accept that disappointments are an inevitable part of life and then cultivate compassion for ourselves over any suffering we’re experiencing as a result of their lack of understanding about what it’s like to live with invisible pain and with invisible illness.”
 
Invisible Illness awareness week

Invisible Illness awareness week

MAKING OTHERS AWARE OF YOUR INVISIBLE ILLNESS

In an article by Sisk, J (2007), she stated that:
“While individuals with visible illnesses—those requiring canes or wheelchairs or causing physical manifestations (e.g., hair lost from chemotherapy, tremors and speech irregularities from Parkinson’s disease)—do encounter sociocultural difficulties, their obvious medical conditions typically engender ready support and understanding from others. However, for those with invisible illnesses, such support may not be as forthcoming. And for those with invisible illnesses that remain controversial in the medical community and public eye, support may not come at all.”
 

BEGIN WITH YOUR DOCTOR

Don’t try and convince your doctor that you have an illness – If you have to do that, find another doctor!  

TALK TO YOUR FRIENDS, FAMILY & WORK COLLEAGUES

Ask your family, friends and colleagues to look up your condition on the internet or give them some information to read (such as the BURNING NIGHTS CRPS AWARENESS LEAFLET for CRPS/RSD sufferers)  

ASK YOUR LOVED ONE OR FRIEND TO ACCOMPANY YOU TO DOCTORS APPOINTMENT

To get your family, loved ones or friends to believe and more importantly understand your condition and what you’re going through, ask someone to accompany you to one of your doctor’s or specialist’s appointments. A Chronic Fatigue Syndrome sufferer; Alison Bigman in the article by Myers, W. (2013) says:
“Sometimes, if they can hear it from a doctor that you are suffering from chronic fatigue syndrome, that will help them accept and start to understand what’s wrong with you..”
 
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This quote could be used with any chronic illness especially any chronic invisible illness. Even though your colleagues, friends and family may never completely understand everything that you’re going through with your invisible illness, they will have a better awareness and understanding that will help you in the end. Myers, W. (2013)  In an article by Bernhard, T. (2011), she said that:
“…. the burden is on those who are chronically ill to make the invisible visible to others. This entails educating people about chronic illness, although it’s good to remember that some people may never accept that we’re disabled by invisible pain or invisible illness. This inability on their part is about them, not us. They may not have had an experience with illness; it may scare them and remind them of their own mortality.”
 

INVISIBLE TO VISIBLE
SO, LET’S MAKE THESE INVISIBLE ILLNESSES VISIBLE TO THE WORLD!

 
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COPING STRATEGIES OF LIVING WITH AN INVISIBLE ILLNESS

In a great article by Grady, B. (2004), he talks of various steps you can take both practically and psychologically when learning some coping strategies of living with an invisible illness. Those steps are:   PRACTICAL STEPS:
  • TAKE YOUR FRIEND – Take your friend / spouse to this group if necessary.
  • READ UP – Read up on the condition, and get those around you to read up on it too.
  • WHOSE OPINION MATTERS? – Decide whose opinion of you is important to you and whose is not (eg, the person in the parking lot you’ll never see again – does it matter what he thinks of you using a disabled parking spot?) For those whose opinion matters, decide if you want to provide facts about the condition, and then explain what this means in terms of impact on you.
  • DON’T FEAR OTHERS OPINIONS – Don’t allow yourself to limit your activity by your fear of other people’s opinions.
  PSYCHOLOGICAL STEPS:
  • Many people with an invisible condition learn the lesson that they themselves have been judgmental in the past. They lacked awareness, and compassion before, and are now on the receiving end. They realize that they are basically no different from the judgmental person, they just have more experience of both sides now. To understand other’s lack of awareness helps them tolerate it.
  • Identify the shame or anger you feel. Ask yourself – what does this hook into? For example, when and under what circumstances have you felt this before? When was the first first time you ever felt this? What is the strong memory or negative belief about yourself that goes along with the negative emotion? Current shame or anger usually is fed in part by old negative experiences. Knowing what these are, can you see that this situation is not a continuation of the past?
  • Ask: How do you invalidate yourself? Others are not the only ones who judge us. How can you expect those who don’t even know your situation well to be more compassionate than even you are to yourself?
  • Ask: what opportunities are there for you because your condition is not obvious?
  • Decide what you will tell people, how much you will disclose, and when in the relationship you will tell them about your condition.
  Burning Nights have also done a blog on COPING WITH CRPS/RSD & CHRONIC PAIN where we have given you 11 coping strategies to try. Click on the blog name -> COPING WITH CRPS/RSD & CHRONIC PAIN The 11 Coping Strategies we have given you in the blog could be used for most chronic invisible illnesses. Why not try a few of them?  
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CITED WEBSITES / ARTICLES

  • Benton, E. (2013) ‘Invisible Disease Awareness Week,’ Huffington Post website. September, 12 2013. Available from: <http://www.huffingtonpost.co.uk/elaine-benton/invisible-disease-awareness-week_b_3908315.html>
  • Grady, B. (2004) ‘Coping with an Invisible Illness,’ National Invisible Chronic Illness Awareness Week website. 2004. Available from: <http://www.restministries.org/invisibleillness/art_grady.htm>
  • Molly’s Fund, Fighting Lupus, ‘What is an Invisible Illness?’ Molly’s Fund website. Available from: <http://www.mollysfund.org/2013/04/invisible-illness-but-you-look-so-good/>

Now is the time to help us raise awareness of Invisible Illnesses and Invisible Illness Awareness Week! Don’t forget it’s between 26th September to 2nd October 2016! Tell us what you have done to raise awareness and understanding of your chronic invisible illness and share it with us in the comments below this blog or share this blog on social media!

  Written: 18/08/2016

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