Miss Invisible - The Shocking Facts and Info About Invisible Illness

People who suffer from invisible illness feel like they walk around in an invisible cloak which means that nobody see's their pain they suffer in silence. Going years battling with endless pain and being told they aren't poorly and it's in their heads. 

In light of Selena Gomez's kidney transplant that has shocked many I wanted to try and present the facts and raise more awarenes about indivisible illnesses.

'You don't look sick.'

'All you scans and tests are clear.'

'Are you still no better?'

Many of you would never have believed Selena suffers so badly with her Lupus because she is still able to 'function' and live. This doesn't mean she doesn't suffer this shows how strong she is to keep going. 

There are so many of us among society who suffer in silence confused ourselves with never getting an answer for our suffering and being told we are fine so to get a grip. 

So let's get to grips with the facts;

- 1 in 3 Invisible illness sufferers develop symptoms in their teenage years.

- 3 out of 4 are diagnosed a year after they first develop symptoms. 

-6 years is the average time it takes from the start of onset of symptoms to being diagnosed.

-only 6% of patients are diagnosed by the first doctor that they see.

-27 per cent see 10 doctors before being diagnosed and 8 per cent see 20 doctors before beinf diagnosed. 

- before being diagnosed 67 per cent are told their symptoms are due to anxiety whilst 52 per cent are told it's all in their heads.

-50%  travel over 100 miles to receive treatment from them homes and 12% travel over 500 miles. 

- 74 per cent of disabled people don't have aids ( wheelchairs, canes etc)

- 96% of illnesses are invisible.

- 60% of sufferers are aged between 18 and 64. 

- The divorce rate among the chronically ill is 75%.

Examples of invisible illness;

- allergies 

- cancer

- chronic fatigue syndrome ( CFS )

- IBS irritable bowel syndrome 

- depression

- fibromyalgia 

- Lyme disease

- lupus

- autoimmune disease

- arthritis 

- MS 

- diabetes

What to say to someone suffering;

- 'How are you feeling today?'

- 'Call anytime, always here.'

- 'I wish I could understand you pain and take it away from you.'

-'I'll keep you in my prayers.'

-'I'd love to know more about your illness.'

-' Can I help in any way?'

-'I am so sorry to hear what you are going through.'

What not to say to someone suffering;

- 'You have what? Never heard of it?'

- 'Maybe you need to exercise more?'

- 'Maybe it is your diet, maybe you should go on a diet.'

-'Are you still sick?'

- 'Have you tried anti-depressants?'

-'You are fine, its in your head.'

- 'Lose weight.'

- 'Gain weight.'

-' You take to many meds.'

- 'Will you ever get better?

- 'You look fine!'

How to offer practical help;

-Offer to go food shopping for or with the person.

-Cook or offer to help cook a meal for the person.

-If your loved one has children offer to watch them or take them out for a few hours. 

-Offer to help with house chores.

-Take your loved one to doctors and hospital appointments.

-Take your loved one out for a few hours or go round for a catch up. 

-Buy a gift or a present to show your love, kindness and support to the person.

-Simply ask if there is anything you can do to help. This could just be being a shoulder to cry on. 

Understand the spoon theory; 

Your loved one constantly cancels, leaves early, is in a bit of a mess at home, has a scattered brain - why?

They may have all their spoons in the dishwasher. 

So what is the spoon theory?

It's tries to ensure that the suffering don't overwhelm, overwork or overdo things that will push them back, tire them out and cause the extra pain. 

Each person has a number of spoons - example 20. They shouldn't use more that 20 spoons their max on a daily basis otherwise they will suffer for it later. Each activity takes a number of spoons. 

Examples;

Cooking 5 spoons

Showering 3 spoons

Getting dressed 2 spoons

Food shopping 5 spoons

Home chores 5 spoons

Taking the bins out 2 spoons

Social meet up 4 spoons

Work from a desk 5 spoons

Bath 2 spoons

Washing 3 spoons 

Short walk 4 spoons

Just a few examples.

So if you friend expresses he/she is too tired or they cancel last minute they may have used all their spoons. They aren't being awkward they just can't afford and don't want to have heightened pain levels and/or spend the following few days in bed recovering. 

The workplace;

How do employers and employees work around & with invisible illness.

A few tips; 

- Be open. Always tell the true and be open about your health. Share test results and treatment infomation if necessary. 

- Break areas need to be accommodating. This may be dimmed lighting, comfy seating, cooking aids, filtered water, non-toxic products etc. 

- Know the law. Both parties need to know and understand their rights.

- Ensure diets are catered for. If your workplace has a canteen, ensure there is food that accomadates specific diets or atleast ensure snacks are available. 

- Be flexible. Hospital and doctors appointments my prop up. 

- Understand the symptoms. Take the time to understand your employees symptoms so you can help / know if they are struggling.

- Learn more about their condition. Knowledge is power, and your research can only stand you in good stead. 

- Know their support systems or local doctors. If any health issues arise, know who you need to contact. 

- Keep their medications on record. If you ever need gain access to them for any reason. 

- Be supportive. It's hard when running a business to be flexible, have employees off / unwell but please try to understand. Also try to be supportive about new treatments or treatment programmes. Even if it is putting a strain on you, you have to look at the bigger picture of your employee's health improving and them being around more.

- Congratulate them. This will help your employee wonders and give the self-worth a boost. Being chronically ill makes you feel 'a waste of space' knowing they are valued you will help them stay motivated and produce better work for you. 

Friends & family;

- be supportive

- plan ahead- give your loved one plenty of time to adapt and get their head around things

- be a phone call away

- keep an open mind

- be willing to be flexible - sufferers have to work on a day to day basis 

- congratulate and appreciate their successes

- research and gain your own knowledge 

- listen

- stand up for them

It's hard on both sides of chronic, invisible illnesses. 

Together, with more awareness, encouraging people to talk further about their experiences and people gaining further knowledge we will help remove the stigma of invisible illnesses. 

Maybe, I hope one day, like all sufferers we no longer feel Miss/Mr Invisible- ignored, dismissed and called crazy but actually supported and listened to.

Remember if you have a loved one who suffers with an invisible illness be their rock.

Love and peace

S

Xoxo

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