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Devaki Sokaris

Live the life your soul wants

5.Chronic illnesses

The challenge of living with an invisible illness

Many chronic illnesses are not visible from the outside. Even though you may suffer from debilitating conditions everyday you may face judgement from those who don’t understand what is wrong with you.

Chronic condition’s come with a long list of symptoms a person must deal with so when one is under doubt and criticism from others it only adds more stress.

Time does show who one’s friends are and who is willing to accept that you can’t do what you want to when you want to. For this reason, over the year’s friends and even family fall away for some sufferers because it doesn’t fit into their friends or families lifestyle and for some with chronic illness it is just easier to be on their own to manage illness without having to constantly explain to others why you can’t do something they want or ask of you because you have an invisible illness.

It may not be ideal for everyone, but in the long run it has just worked out better for my health to not have friends as they eventually fall away, or I just can’t deal with the piece of me they want despite boundaries I have tried to lay.

It can be hard to be around people who are invested in not understanding what you may be going through. I don’t speak about my health much unless I need to but I remember once when I told someone I had chronic fatigue they said yeah I get that sometimes and just need a good night’s sleep when all they had was a late night out on the town or I have received and heard similar responses to others about anxiety disorder and depression when people have said ‘’ everyone has anxiety and depression sometimes’, when although that may be true it isn’t the same.

Other responses are but you look so good leaving you feeling like saying next time you visit I’ll make sure I look like crap, so you know it’s real. Just because your mouth works just fine, and you look after your appearance does not mean you’re okay. I’m sure many who suffer with chronic illness will relate to this.

Living with chronic illness and pain can make you feel anxious and depressed. The most compassionate thing you can do for yourself is to look after yourself regardless of other’s responses.

Suffering a chronic illness for a lot of years often makes one a genius in hiding the pain to appear normal even though you may be in severe pain. This of course doesn’t help others believe your sick either but to a chronic sufferer it isn’t healthy to walk around looking like they are going to cark it any moment.

Awareness ^

A lot of people reach out to social media to create awareness and perhaps get support. I personally have mixed feelings about this because I also see the stigma attached which isn’t helpful to anyone.

Also, many people only offer platitudes in their response which doesn’t help a person either especially when they are not looking for sympathy but rather to advocate awareness of invisible illnesses.

Support groups can be of help to some but in the early days of my chronic illnesses I found those groups to be nothing short of depressing where people sat around comparing symptoms. It was not for me. People must find their own way of accepting the limitations chronic illness presents and preferably things that are more uplifting.

Helping people understand ^

Invisible disabilities have a stigma attached to them so when people receive a lack of empathy from family, friends and doctors it adds much more stress.

If you can’t convince the doctor what you have is real, you’re seeing the wrong doctor. There are more doctors now who believe many illnesses like chronic fatigue and fibromyalgia are real and there is documented proof of that from specialists such as rheumatologists.

You can also provide that information to friends and family which can be helpful in them knowing what you have exists. You can also take a relative, spouse, or friend to the doctor with you as sometimes when the doctor acknowledges your condition, they will try to understand better.

Healing ^

There are many ways to improve mental, emotional and physical wellbeing. Whether it be from conventional medicine or unconventional methods or a combination of the two it is a personal choice.

Given there are no cures for many of these illnesses one must find a way to manage and live with chronic illness so to have the best possible quality of life they can. Many people will have their issues for years and life for some so they get plenty of time to trial different methods to see what works for them.

Spirituality can be the missing element that integrates a person’s healing journey. For me I was already on a spiritual path, but I know if I had not been on this path I may be on a lot of medication.

Many people turn to spirituality is times of trauma, healing and major life change as it gives a better sense of feeling connected to our true selves, others and the greater consciousness.

Much of the orthodox path has not worked for me and I am also super sensitive to medication and there are also many foods I cannot eat so my diet is quite bland to maintain the best quality of life.

There is no one diet, single supplement, food or practitioner that is the answer for all. It about discovery and experiment. Always listen to your body and trust your intuition when choosing and remember you know your body and self-better than anyone else.

I have learned to take no notice of what conventional medicine and food is healthy for me and trust my own intuition and that what works for me is what’s healthy no matter how much it conflicts with what medicine says.

With IBS alone, I have discovered medicine doesn’t no much at all to treat it and their answer is to eat more fibre when it is an enemy nightmare to anyone with bad IBS. If something you do gives you better quality of life its what’s healthy for you.

Acceptance ^

I have lived with chronic illnesses since I was a child and have for the last 25 years been living with chronic fatigue syndrome (CFS) also known as myalgic encephalomyelitis (ME), fibromyalgia, severe IBS, and general anxiety disorder.

I have come to understand the gems that lie within the life limitations and how my illnesses have provided value for my growth in learning to live with purpose through these limitations.

All we can do is show through our own lives what is possible and even though a person may not be ready for some things it does give them hope many things are possible for their path. I have and would never say to anyone If I can do it, so can you.

It’s still a person’s choice how far and what they are willing to change in growing with the challenge of chronic illness. It not our place to judge others for their choices.

We all come into the world with limitations in some way or form because they are there to help anchor us into seeing what is real and where we need to dig deeper in rediscovering who we are.

You can read more of my story.

Devaki Sokaris:

Colour portrait of Devaki

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