Misconceptions Of Living With An Invisible Illness – Invisible Disabilities

There are many common misconceptions of living with an invisible illness and many don’t think about these when someone mentions they are living with an invisible illness. Invisible disabilities are a real thing and something that many have to live with.

With 100’s of invisible disabilities that people are living with and the list is very exhaustive, however, if someone mentions they are living with an invisible illness, then be mindful when you make assumptions or comments about it.

We have all seen someone share something on social media about a struggle they have been through. Whether it was someone screaming at them for using a disabled car parking space although they have a badge because they ‘don’t look disabled’ and completely ignoring the fact that invisible disabilities is a thing. Or laughing at someone using a cane to keep their balance.

Not many people really understand how embarrassing it is regardless of living with invisible disabilities, nevermind being subjected to abuse, shame and embarrassment.

Having to live in constant pain, or difficulty moving about – whatever the issue may be – it is NOT easy.

I hope this helps answer some misconceptions that many have. It’s fine to have them but be mindful when you think about someone you know who may have one.

So what are the common misconceptions? Well, let’s take a look at some!

Common Misconceptions Of Living With An Invisible Illness

You don’t look ill

I can’t tell you how many times someone has told me that I don’t look ill. I am not actually sure how I am supposed to look either?

I’ve shared many a meme about this as it is a common comment I get. Well, darling, I can look fabulous and still be chronically ill.

You only see the rare picture of me that I share where I have makeup on, that took me hours to put on in between regular stops because my arms hurt. Or the fluke when I woke up with great hair and I am not looking on near death’s door.

But you don’t see me curled up, crying from the pain my body is making in some random part of me. Or lying down as I feel yet again like I am going to faint.

I wish it was a case of your looks to match your health. Maybe I wouldn’t be so ill.

It’s ridiculous to tell someone they don’t look ill, I mean, you don’t look stupid so…

I’ll never forget a conversation I had where I had to explain why I had makeup on to someone who claimed I was ‘faking being ill’. Wearing makeup is something I love, but it is rare that I am able to. So if I am able to slap on a face then I will. But it takes me a good 3/4x longer than anyone else so putting on some makeup can take up a good portion of my day.

This makes me feel better as a person. It gives me confidence.

So a common misconception is that everyone who has a disability or invisible illness has to look a certain way. This is very unfair and very discriminatory. Whether we wake up and slap on a face, or we go as an unkempt mess. Our looks should not determine how sick we are.

You are just lazy

Oh, this is a good one. You are just lazy. I wish I was lazy.

One thing I taught myself was to pace so I do the same amount of activity each day regardless of how I feel. This means that if I am fainting, in sheer pain or can’t get off the toilet much, I still have to do my daily amount of living.

I’ve been accused many times of being lazy and using every excuse under the sun for why I am ‘ill’. A term used quite loosely with these people.

Surely if I was just ‘lazy’ I wouldn’t be doing anything, rather than struggling every day to simply get out of bed, get lunches made, school runs, cleaning, working and looking after my family.

I work long hours each day, 7 days a week to ensure we live a very comfortable life so laziness is not in my vocabulary. But thanks for calling me lazy.

You will find that many try and live as much of a normal life as they can, it keeps them going. There is nothing worse than being bedbound, trust me, I have been there.

So no, a stupid misconception that we are lazy.

But everyone feels tired

Darling, there is a difference between feeling tired and chronic fatigue.

An average person can get a good nights sleep and feel remotely better, it’s temporary for them. This is permanent. I can sleep exactly the same as anyone else and no matter how much I sleep, I STILL am exhausted.

This never goes away. Never. Ever.

An average person can have a cup of coffee/red bull/energy drink and I can drink 10 and I am still fatigued and exhausted.

No matter what I do, try and sleep, I am still waking up and never feeling refreshed. It’s not something I have ever felt in my life. I go to sleep tired, I wake up even more so.

It’s a constant loop of exhaustion, fatigue and never-ending tiredness.

I wish I was just ‘tired’ as I could sleep and feel fine.

This is a common misconception that we just need a good nights sleep. Sadly this is not the case at all. There is a lot more to it.

Some do have sleep issues, I have in the past and even now I find myself awake until 3am or 4am and don’t know why.

Being tired from lack of sleep is very different to constant fatigue and exhaustion.

Have you ever had a dream where your limbs are heavy and you struggle walking? Most people have had this, either running up a hill, wading through quicksand or something of the like. Well, for me personally, this is my real life. This is how I feel especially in the morning. From being so exhausted and fatigued.

So, another one of the misconceptions of living with an invisible illness – sleep doesn’t change anything.

You can see the Doctor to get better

I am sure my Doctor will tell you just how fed up they are of telling me there isn’t a lot they can do to help me.

A common misconception that many have is that Doctors can actually give us magic pills to make us better or offer something that can help us lead a normal life.

This is very wrong and many who live with invisible disabilities and invisible illnesses will tell you themselves about the very minimal support they get from Doctors.

Just read any journey into their invisible disabilities or ask someone you know. You will find out that most are treated dismissively and basically told (or in my case told) ‘What do you want me to do about it?’

There is only so much a Doctor can do for us, there is nothing out there to hep with fatigue and exhaustion, painkillers only work so much and don’t fully take away the pain.

Don’t forget, the longer we take medications, the less effective they become over time. I do a week or 2 detox and stop taking painkillers so they become more effective again.  Some have to take more or take a stronger version just to get some relief. This can cause addictions and our bodies become dependant on the medication.

I use a lot of holistic therapy as well as medication from the doctors. For example, I’m now having to take a medication for my heart as there is nothing else I can take for it. Also with the pain, I take painkillers daily to get me out of bed and medication for nerve pain.

A very common misconception is thinking that we can get help from a Doctor. Whilst in some cases we get things to help, overall we have to just manage it as best as we can.

Aren’t you being a bit dramatic?

It’s just a headache/stomach pain/back pain/*enter ailment here*.

Oh, we all wish it was just a headache!

Now I am not saying we are in more pain than you, but we have the pain almost every single day and nothing works. Gone are the days of taking paracetamol for a headache and it semi-working. The last thing I want to do is take away the struggles others go through when they are going through something horrible, but we know exactly how you feel and most of the time for us, it’s not just something simple that we can easily help, or is gone in 24 hours.

So please be mindful when you are talking to someone with an invisible illness and invisible disabilities and try not to say ‘Oh, it’s only this’. Just like we won’t do that to you either.

It’s really upsetting when people try and downplay our illnesses. I tend to not talk about them because I worry people would think I am dramatic or an absolute moron.

So no, another common misconception we are being dramatic about it. More so, we are fed up!

Why don’t you try this or that?

We’ve tried everything you can shake a stick at. Whether it has been something suggested for nausea, headaches, pain, stomach issues, fatigue and the myriad of issues we face, nothing has worked for the majority of people.

It’s not so much the suggestion to try something, rather the backlash when we explain we have already given this a go. Living with an invisible illness and invisible disabilities is never easy and I wish people were more mindful.

The perfect example is exercise for some ailments. Whilst it can be beneficial for some, it’s not for everyone. Especially for those who have muscular fatigue after exertion. So we go through the pain of doing the task anyway, then we have several days of further pain from the chronic muscular fatigue and pain with M.E.

It’s all well and good telling us to ‘go exercise’ and whilst it works for you, it doesn’t work for everyone with invisible disabilities.

Same with eating. I eat rather healthily. I am vegetarian and eat a very balanced diet. Now the number of times I have been told to eat meat, it will make me better (Trust me, that is why I am vegetarian, I don’t digest it very well) and to eat better when I already have a healthy diet is beyond me.

There are people out there that don’t have a great diet but generally, there are reasons behind it. They can only stomach certain foods or limited ability to cook due to their invisible illness so can only throw something in the microwave.

So a common misconception that we refuse to try things, when in reality, in our desperation, we have tried everything!

Surely you are faking it?

Nope! I’ve been asking this a few times. Especially when I am ‘getting out of something’.

I’m not able to plan ahead so things are spur of the moment.

Just because one day I can go shopping doesn’t mean I am fine. Think of it like this. My life is like a rollercoaster, I never know what is coming next. One day I can have a day where I have less pre-syncope symptoms and can get around a shop and the next I am struggling to get out of bed.

We take every day as it comes as I never know how I am going to wake up. Am I going to have a better day? Am I going to be in loads of pain?

This can make people think I am faking it to get out of things. I wish this was the case. If I was faking it, wouldn’t I be doing things I liked? I rarely if ever do anything.

Can’t have a night out, rarely go shopping. I live a life at home working all hours because it is all I have left.  Not that I am complaining, I have a beautiful home office where I am comfortable with everything I need around me. I have adapted to this life and making the most out of it.

So this is a common misconception, we are not faking it.

You can’t fake blood tests, MRI/CT scans etc.

You cancel or don’t make plans because you can’t be bothered…

This is very incorrect. Although quite a common misconception!

I’ve made plans many times and had to cancel last minute because I have had a bad attack with my bowels, I am fainting today, or sciatica has reared it’s ugly head, maybe one of my bulging discs have become worse and I struggle to move around.

Now I tend not to make any plans because I feel so bad when I have to cancel for whatever reason and I know that sometimes people think I am making excuses not to do something. Sadly this is not the case.

I find a lot of things hard in life and I am always trying my best. I’ve seen people first-hand moan that their friend/family member with an invisible illness has had to cancel *yet again* because they have something wrong with them.

I’ll be honest, I try to do things I know I am able to do. Such as a phone call or offer to come round here because I am close to things I need – painkillers, toilet, warming back blanket etc.

So if I have personally let you down for whatever reason, I am truly sorry but it’s really not my fault.

I can’t go out if I am finding it hard to move because of the back pain from a slipped disc, or I am having a day where my fainting is really bad. The last thing you need to be dealing with is whatever is wrong with me.

I feel terrible so I just won’t make plans anymore. If I am able to do something, it’s always last-minute now.

Final Thoughts

Living with an invisible illness is really not easy and honestly, sometimes it pays to be more mindful.

Whether we are moaning because we are fed up, or cancelling plans, please be patient and understanding. Just as we would be if you were in our shoes.

You can have invisible disabilities and still rock at living!

Copyright: Image by StockUnlimited