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Would You Rather: Have an Invisible Illness or a Visible Disability?

Would You Rather: Have an Invisible Illness or a Physical Disability? | www.achronicvoice.com

To clarify before I begin – I have a variety of chronic illnesses that affect the blood, brain, heart and virtually any body part, but I know nothing about physical disability and have only been confined to a wheelchair once. So if I made a mistake in this article, feel free to correct me. Having read articles such as this and that, I realise that cultural differences do affect perceptions as well. I am also aware that this topic might be controversial, spark anger or trigger indignation in some people. But I have decided to go ahead and speak about it regardless. What is the point to that?

Honest Thoughts that Go Through My Head
For starters, these are actual thoughts that go through my mind as someone who lives with a host of invisible illnesses; an old or disabled person in a wheelchair enters the elevator, and everyone is immediately accommodating and respectful. No questions are raised regarding their right of way.

Then I struggle to limp out as fast as my inflammed joints will allow, so as not to stir the visible annoyance of those exiting. Perhaps I should smile and explain my predicament, but that would take longer than the amount of time needed to drag myself out.

Breaking Stigmas and Raising Conversation
Secondly, I believe that open conversations about such issues help to break the stigmas surrounding them – the ‘untouchable issues’, the ‘hush don’t ask issues’. Too often we avert our gazes or train our children to stifle their innocent curiosity towards those with disabilities. Doesn’t this only condition one to avoid instead of engage? Doesn’t this increase needless misunderstanding, instead of fostering genuine communication?

It is common for even friends to squirm or become nervous, when you mention ‘pain’ or ‘despair’ in reply to their, ‘how are you today?’. Thank you for asking and don’t fret over the ‘right way’ to answer! This is part and parcel of my everyday life; I am going to talk about it as it is my normal.

I would like you to be comfortable asking real questions with a genuine heart. I believe that the physical act of voicing out these thoughts will impact our psychological awareness about them. To keep them under wraps due to fear of offending only fuels the stigma that these are phantom ills in society. This not only breeds misunderstanding of the conditions in themselves, but also the people beneath that layer.

“Pros” of Physical Disability
For a ‘plus’, people tend to be more accommodating, patient and empathetic, when they come across a physically disabled person in public places. Perhaps they are thinking to themselves, “Oh such a poor dear. Imagine if I didn’t have a leg too? That would be awful.” They are able to relate immediately to the suffering of the person before their eyes. But internal pain is invisible, and unable to trigger such thoughts without a good deal of imagination.

Employers also seem more accepting and understanding in general, and nobody at work thinks that you’re faking your disability. But those with chronic illnesses are often doubted, and can provoke accusatory looks. They may be in tremendous pain one day but tip top shape the next, which is a difficult concept to grasp. “That’s not how the body works!” But that’s exactly right – our bodies don’t work like everyone else’s.

Physical issues are also easier to visualise, since there is a frame of reference. Doctors and surgeons are able to examine them closer to some extent, and attempt to fix the problem (although success rates might differ). An autoimmune disorder or chronic illness goes right down into your DNA, and can affect any part of the body. You often throw in huge sums of money (if you even have that amount to spare), and play the lottery with your body. The chances of winning are about the same as that in real life 😉

“Cons” of Physical Disability
Being confined to a wheelchair also means that you never get any ‘time off’. You can’t just up and go for a swim, and not every place you’d like to visit is disability friend either. Navigating shop aisles can be a tricky undertaking, and holiday options become limited. These are restrictions that don’t even cross many of our minds. Chronic illness patients do get glimpses of good days, and tend to spend them with much joie de vivre.

I am also glad that I actually don’t look sick, despite this being the bane of invisible illnesses as well. I cannot imagine how I would look like if my internal problems were all manifested upon my physical form. I’d probably look like an imhuman being that makes children cry, and it’d bring about greater bouts of depression as well.

There are No Winners Here, Obviously
As human beings all we can do is adapt to our circumstances, whether we like them or not. There isn’t much we can do in public, as every encounter with a stranger lasts for only the briefest of moments. All I can do is to share information with anyone who shows interest, and hope that it creates a ripple effect.

We also need to be aware that there are those with chronic illnesses who may not be confined to a wheelchair permanently, but need mobility aids on certain days. Some are unable to walk for long distances without collapsing, while others suffer from vertigo. Some have chaotic heart rhythms, while others experience crippling aches or fatigue. The list goes on, and these few examples are to show you that wheelchair usage isn’t black and white.

Looking at it as Opportunities to Raise Awareness

We shouldn’t feel guilty when we need a little more time to move around because of our pains. There is no need to feel embarrassed for occupying a disabled seat on public transport. All much easier said than done, I know! But we don’t have the energy capacity that others around us may have, and that’s okay. Take your time. Should someone go out of their way to make us feel uncomfortable, perhaps we can turn the tables, and take it as an opportune moment for education.

I hope that this post raised some awareness on the dilemmas we face with (invisible) disabilities, especially when coming into contact with our harried society. Here’s sending both visible and invisible camps nothing but good thoughts!

*Note: This article is based on my personal experiences, and nothing should be taken as medical advice. Always be sure to check with your doctor before you start on any new treatment or protocol, whatever that may be.

Read More: Invisible in Singapore: What It Like to Live Here with Chronic Illnesses?

    For More Insight:

  1. Why it is Disrespectful to Correct me when I say that I am Disabled (findingrainbowsinthedark.com): http://bit.ly/2MBnTva
  2. 11 Perks Of Being A Wheelchair User (wheelescapades.com): http://bit.ly/2QGmftu

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Some honest thoughts that go through my head, especially when my pain is disbelieved. What are the 'pros' and 'cons' of invisible illness vs disability? Click to read blog post or pin to save for later. ////////// invisible illness / physical disability / chronic life / spoonie problems / society and humanity / empathy / be kind #depression #chronicillness #spoonies

Some honest thoughts that go through my head, especially when my pain is disbelieved. What are the 'pros' and 'cons' of invisible illness vs disability? Click to read blog post or pin to save for later. ////////// invisible illness / physical disability / chronic life / spoonie problems / society and humanity / empathy / be kind #depression #chronicillness #spoonies

Some honest thoughts that go through my head, especially when my pain is disbelieved. What are the 'pros' and 'cons' of invisible illness vs disability? Click to read blog post or pin to save for later. ////////// invisible illness / physical disability / chronic life / spoonie problems / society and humanity / empathy / be kind #depression #chronicillness #spoonies

8 comments

  • A very sensitive subject indeed but you have really done a good job by writing about it . Mine too is a invisible illness . I have a #Jpouch ,which gives me a hard time going out even for short period of time. My problem is my BM COUNTS . I can’t stand in lines outside the restroom facilities. Sometimes I am at the verge of crying when I can’t find one nearby . No one around understands my plight except my immediate family. One cannot make the surrounding people understand these difficulties. I don’t carry any badge saying “ I have a Pouch which can leak ,please let me go first”. I think any invisible chronic condition is at risk of getting weird looks in public places . Can we change that ? Perhaps NO. Thank you Sheryl for taking this untouched subject.

    • Thank you for sharing. I can only imagine how frustrating that must be for you 🙁 Maybe we should print our own education badges or flyers so we can hand one out quickly. While they’re taking it we can dash into the bathroom first 😉 I don’t know, but there has to be an easier way!

  • I think I would rather stay as I am. I use my mobility devices as I need them. Yes, I get looks when I get out of my car standing and get into my wheelchair but I would rather deal with that than to have no choice. I do not have a handicap sticker so I leave the handicap spaces for the others. (although I do qualify for one)

    I have just had to toughen up and not worry about the looks people give or the rude words some people say. I try to use those as opportunities to educate rather than allow it to break me down.
    Mary Frey of “The Frey Life” vlogs about this a lot and I love her attitude!

    Jen @ TheFrozenMind.com

    • Thanks for the reference and for sharing your thoughts! It’s definitely not easy to ignore the immediate world around you, but we do what we must to live a good life indeed. Great job and remember that we are all behind you, and believe you 🙂 x

  • Another great and thought-provoking article Sheryl. While most of the time my disability is invisible, when I exercise and fly I make it visible by using oxygen. So I get the best (and worst) of both worlds! For the most part I’m grateful that I can fly under the radar and look healthy most of the time. But I’m sure if I had to wear the oxygen 24/7 I’d get better accustomed to the weird looks and feel less weird about sitting in a reserved seat. Either way, I myself try to be as openminded about everyone I encounter since you never know what’s going on under the hood.

    • Hi Sarah, thank you for taking the time to read this and to share your thoughts! It’s a touchy subject and without reading, easy to misunderstand! I have changed the title from ‘physical’ to ‘visible’ as someone correctly pointed out, physical disability can also be invisible, sadly 🙁 I agree these days I make it more obvious myself, heh. I just squat in elevators doubled over if I have to – no more dignities of my 20 year old self ;p And planes you should definitely make it obvious. Even a short trip knocks the wind out of me and requires a whole day or two of recovery after. I wish you many more happy trips to come though x

  • I found this so interesting to read Sheryl. As someone with MS, I have mobility difficulties but lots of invisible difficulties too – cog fog, fatigue and chronic pain to name a few. I have to say that when I started using my crutches and scooter, I finally felt ‘believed’. I don’t have to worry about putting my disabled badge on my car and worry that people are going to think that I am a fake. But there are problems too – a distinct lack of access around the UK and abroad and believe it or not I get a lot of ‘looks’ from older people with mobility aids as though I am making it up. For example, I may stop my scooter on the pavement to wait for an elderly person using a walker or a cane and they don’t look at me or say thank you. It’s frustrating but I have got used to it I guess xx

    • Hi Jenny, thanks for reading and sharing your thoughts. So important to hear from actual people themselves! When I first wrote this in 2016, I wasn’t even thinking about those with a combination of both (have since updated it with a paragraph at the end). Over the years I’ve become more aware through reading blogs (thanks to people like you!). It’s definitely such a tricky thing, hey? And you’re right, I actually seem to get judged the most from the older folks outside. Many of them have this ‘right of way’ attitude that borders on dismissive. This might be due to cultural reasons too, with the whole Confucianism philosophy we’re raised on, where we’re supposed to respect the elderly and that they come first! I guess all we can work on is our own sense of self-confidence and self-worth – I find that that helps a lot with most everything in life! People seem to naturally believe in you too when you express a quiet, genuine sense of that. Sending you good vibes for the weekend! 🙂 xxx

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