Truly Invisible

We, the collective 'we'  of Spoonie-dom, speak a lot about Invisible Disease; the illnesses that cannot be perceived by a cursory glance. These illnesses are umderneath the surface and often go hand in hand with the dreaded 'but you don't look sick' comments and the general distrust that comes with it. 

However, many of the illnesses that fall within that umbrella, especially once officially diagnosed, have some kind of specific evidence to back it up. 

For instance, sure you can't just notice inflamed intestines by looking at someone, but the pathology in their last colonoscopy would show inflammation or their bloodwork may show something a little off, like increased inflammatory markers. Many diseases are difficult to see but have medical science to back it up - like abnormal bloodwork, CT scans, MRIs, ultrasounds, biopsies, etc... 

But what about the truly invisible diseases? 

So far as we know, science has yet to distinguish any particular visible evidence (even under a microscope) to detect and definitively diagnose Depression. It is an illness of the mind. There is no blood test that says "yes, you 100% have Schizophrenia", or a CT scan that shows a blip that can only characterize Bipolar Disorder, for example. We can't just take a deeper look and know exactly what mental disorder someone may be struggling with, and we can't physically see it anywhere (at least not right now). So how do people cope with truly invisible diseases? How much of their time is spent just trying to convince health professionals that something is seriously wrong? 

Take a minute and think about how to explain a complex emotion to someone who can understand the words but who cannot empathize. Take grief, for example. There are a million ways that people have attempted to capture the all-encompassing feeling of true grief in words. Poetry/music/prose - for hundreds of years it all touches on this complex emotion. Unfortunately though, while most people have a general idea of the feeling, not one person will be able to truly empathize until they, too, have experienced it. We can think logically and we can try to connect it to our own lived experiences, but until we have legitimately and desperately grieved, we kind of don't have a clue. 

The same goes for these truly invisible diseases. We cannot physically see the scope of the damage, we cannot appropriately empathize. We are ill-equipped to fully grasp mental illness, unless we have it ourselves. And even then, every single illness (of any type) will be different and unique to every individual. 

So how do we help? 

Some tips:

1. Never assume any medical status based on how someone looks. 

2. If we cannot offer empathy, it's validitation and effort that's most important. 

3. Try not to be dismissive of another person's experience regardless of our own feelings and internal thoughts. 

4. Remember that it's not necessary to sit and analyze every single thing, nor is it necessary to put forth unsolicited advice or 'fixes'. Sometimes it's better to just be a calming presence. 

5. Remember that trying to navigate an entirely invisible disease is exhausting and soul-depleting. 

Invisibility

Having an invisible illness usually goes hand in hand with feeling like you have to prove how ill you are.
Looking completely normal can be a very very good thing - on days when I want to pretend like I am not ill, all I have to do is plaster a smile on my face and go.
Looking healthy is a wonderful thing, specifically in our society.

Looking healthy also comes with challenges. Often people have a hard time believing the severity of your illness (if they believe you are sick at all). It is really tough to wrap your head around seeing someone laughing and joking and working and even playing sports and knowing that they are severely ill. It seems impossible. It looks inaccurate. And it breeds rumours.

But how can we prove it? Should we carry around our scans and biopsy results to show to people who are doubtful? Should we carry doctor's notes explaining why we need a handicap parking permit? What about scope images, organ images, or why not just carry a copy of our entire medical file with us at all times?
The problem is that the proof is sometimes a combination of various things. It can include bloodwork and x-rays, bone scans and MRI scans, or biopsy results.

There are several symptoms, like nausea, vomiting, swelling, pain, dizziness, trouble sleeping, trouble concentrating, blurry vision, irritability, nightmares, sleep apnea,  muscle weakness, low energy, internal voices, anxiety, shaking hands and knees, migraines, etc... that cannot be seen.
NONE of those symptoms are visible to the general public.

How do we explain it all? How can we 'prove' how ill we feel if the proof is in the toilet? Or inside our intestines? Or inside our mind?

Invisible diseases.
A diagnosis alone does not seem to be enough proof...