A roughly edited conversation between my Acupuncturist and I which sparked this idea:
Cass: “We said that I should be back at work by this time. I don’t think that is going to happen anytime soon”
Acupuncturist: “You’re right, it probably won’t happen anytime soon, BUT we have made progress”
Cass: (thinks to self) What progress have we made?
Acupuncturist = 1
Cass = 0
With Invisible and Chronic Illnesses we tend to lose sight of how much progress we have actually made, as we live with pain and other symptoms every day.
I know that I personally still walk around feeling saddened by how weak my body is. There is something inside of me that still cannot accept this, and thinks that if I am not back at 100%, then I have not made improvement at all.
If we show on the outside that we are feeling slightly “better”, society automatically assumes that we are cured from our disease. They cannot understand that we still suffer, but have made slight improvements, or that we have learnt to manage our symptoms better.
If you are having similar thoughts and are currently drowning in symptoms of your Chronic Illness, let me firstly tell you that you are far from alone, and it DOES get better.
Now, I can see you all of the way here from my desk in Australia.
You are rolling your eyes, you are shaking your head, you are sighing because you have heard that statement so many times before. You will tell me that I don’t understand, that I do not feel what you feel.
But, I do.
I know how you feel, because I have felt the same way for almost a year fighting my own illness and inner demons, and my fight is FAR from over.
I wanted it all to end, and have contemplated suicide more times than I can count on two hands.
I saw no reason for me to stay here in this world if I had to continue fighting this way, being a guinea pig for Specialists all over the city, feeling this neverending loneliness.
I was tired of the appointments, and the dead-end answers I was reaching.
I was even more tired of taking medication for no solid reason, the money coming out from my account and most importantly, hearing people tell me “it will get better”.
But I’m here to tell you that it DOES get better, and I have discovered a way of proving it to you.
I wish someone showed me this ten months ago, so I could’ve started learning to love and respect myself, and my body.
I have made up with a term called Invisible Illness Progress Portraits (or IIPP) where you take a photo of yourself once a fortnight (or month), and store them in a folder on your laptop or print them off and attach them to a calendar or poster board. I write how I was feeling at the time of each photo, and obviously date each of them.
I know that taking a photo of yourself during illness is terrifying and probably the furthest thing from being considered as “attractive”.
We are obviously not going to look like Kim Kardashian in her published Selfie Book, and that is fine because THAT IS NOT THE POINT OF THIS.
The point is to begin a collection where YOU can actually SEE the progress you have made, and so that when you are a year from now you can look back and realise how brave and strong you really were.
And when Specialists like mine say “you have really made progress”, you can say “Yeah, I really have”.
You don’t have to publicise it. Keep it as a present for your future self.
If you do not want to take photos of your face, by all means take photos of something that you have conquered in the face of your illness. For example, a bigger meal portion, a trip to the Doctor, a walk to the bathroom.
I myself have only begun this, so I don’t have many photos of myself during my rougher illness days, (that’s where my regret comes in) but looking back on the photos that I do have, makes me realise how far I have actually come.
I have a few scattered over the months to show you, to give you an idea.
I was severely underweight from living off of dry crackers, water and mashed potato, my skin all over my body was riddled with acne and I could not walk more than a metre alone. You would never have caught me wearing anything but an oversized jumper and loose leggings, as I was too embarrassed of my protruding bones, and I felt absolutely horrid every single day.
A lesson I am still trying to learn is that Progress does not mean a drastic change.
Progress means slight/gradual.
You can walk to the fridge one day,
You are able to shower alone,
You are able to have two mouthfuls rather than one,
You have put on one kilogram or lost a kilogram.
All of these examples may seem tiny, but they are still progress!
So, take a moment and think about yourself. Tell me honestly how much progress you have made today, and it is okay if you can honestly say you have not made any.
I know that when I look back at these photos, I realise I can walk better than ten months ago, and more than before even though it is nowhere near close to what an average person/the old me used to.
I am able to eat more, without throwing up or feeling excruciating stomach pain.
I have less nausea than before, and less frequent violent dizzy spells which accompany.
As my images expand over the next few months, you will slowly see me wear a little bit of makeup, have the energy to straighten my hair, wear nicer clothing, and most importantly, smile.In between these images, you will also know when I have gone backwards, because I am obviously not cured!
You will see the days that were rougher than others; where I cried beside the toilet bowl, where I had a cold towel over my eyes to help my migraine, where I could only stomach liquids all day.
And there you are again telling me that you don’t want to be reminded of such a time, that you want to rid the negativity from your mind. But if you don’t face who you were through the illness, how will you grow? How will you notice the change in yourself?
I can promise you that you will appreciate yourself more for having battled through those awful days and conquering when you thought that it was near impossible.
I know I do.
I would absolutely love to see your progress, (remember that Progress means gradual!) so if you are willing, send me an email via my contacts link!
Alternatively, you could tag IIPP or link to IndisposedandUndiagnosed in your post, and I will check the tag as frequently as possible!
Please, in celebration of Invisible Illness Awareness, join me in documenting your journey.