My illness is invisible. What does that mean?

Updated: Sep 3


Those pictures were taken on the same day, just a few hours apart.

My illness is not visible. I don't miss an arm. I'm not using a wheelchair. I look and sound completely normal (if I try :P). If you meet me on the street, you may never know that I am not well. "That's great", you may think. But what are the downsides of living with an invisible illness?


The positive thing is that sometimes I can just go out an pretend I'm as normal as any other person. I can hide my illnesss if I want to. If I'm not comfortable with any strangers knowing, I don't have to mention my illness and nobody will know. People with visible disabilities don't have that choice. They cannot hide the fact that they are disabled, even if they might want to. As a young woman I can totally understand why you would not want every stranger to know the most vulnerable thing about yourself.


But with this advantage come so many disadvantages.

People just don't know how to react when a person who looks completely normal claims that they are not "normal" at all.

They don't know how to react when a healthy looking young woman takes up a priority seat in public transport.

They don't know how to react when a perfectly fit looking young man takes up a space on a disability parking space. They don't know what to say when a pretty young woman needs to use the disabled bathroom. Some may react very rudely and judge you for taking up a space that they think is clearly not meant for you- when in reality it actually is. The person in need of the space is just not meeting their expectation of what a person with a disability is supposed to look like.


But the problem isn't really strangers on the bus. The tragic thing is that even some doctors and healthcare providers often have the same stereotypes- and treat patients accordingly.


Bias in the medical field

For years, hardly any of the doctors I saw really took me seriously.

I heard so many times that I'm so young and "full of health" when the test results came back normal. I'm probably just having troubles with allergies (that got treated but my symptoms didn't get better at all) or it's probably "just" psychosomatic. So to put it in a nutshell- I just gotta put myself together, stop whining and get going.

When test results would come back normal, so many doctors saw this as proof that there was actually nothing wrong with me, instead of really listening to me and looking for other things that could cause my symptoms, or referring me to a specialist.

So often I left a doctors office feeling really dumb, that obviously everything must be just in my head. I felt really stupid and ashamed for "whining" when there was obviously "nothing wrong".

You can imagine what a great relief it was to finally meet a doctor who took my symptoms seriously.


But even when I finally had my diagnosis, there were a few doctors wo said pretty terrible and frankly- disrespectful things to my face. Some were telling me that I'm not really in need of a certain medication that my insurance denied me because I'm actually "young and healthy", that I'm "too young to be that sick", that I'm "not doing enough" to get better, that it's "all in my head" and if I "go on like this I'll never find a job again". Or that I'm using my diagnosis to avoid situations I don't like. There was even a situation where I was ridiculed in front of other doctors and nurses in a hospital. I don't want to go into detail about that situation because it was just horrific, and reliving it fills me with shame and anger. But I think it goes without saying that the last thing you need when you are in pain and discomfort is people making fun of you, or putting pressure on you.

People who swore an oath to help people, who I trusted with my problems in a very vulnerable situation, took that trust and threw it out of the window - and left me feeling ashamed about myself. Some of them didn't even take the time to read the documents I brought from my specialists who diagnosed and treated me. They saw a young, normal looking woman and instantly formed an opinion.



Things to keep in mind when seeing seemingly "normal" patients:


1- They might be faking it- but they also might not be!

There is this prejudice going around that there are so many people out there faking an illness for attention and while this might be true in some cases, we can't make the mistake to assume that's the case with every single patient who seems "normal" to us. What seems "normal" is after all very subjective. And while some people out there may seek this kind of attention, let me tell you from a patient's perspective- I'd really prefer to be healthy and not needing this kind of "attention" at all. I don't seek medical care for "attention" or because sitting around in doctors offices is so much fun, I see doctors so I have a chance to be diagnosed, to get treatment to relieve my symptoms, so I can get some life quality back.


If my illness would have been taken more seriously earlier on, if I would have been correctly diagnosed and given the right advice on how to adapt my lifestyle to my illness, I could have at least prevented getting worse. It is important to take all patients seriously, even if they look fine at first glance, because we can't know how it feels to be in their skin, unless we really listen and try our best to get them the proper care they deserve.


2- Negative test results are no proof that the person is faking it. It just means that the right answer has not been found yet.

When test results come back negative the conclusion shouldn't be "oh then they must be faking it" or "it's all in their head", the conclusion should be "I believe this person is in pain, but the testing has not been conclusive so far. Let's see, what else we can do or what specialists we could refer them to".

After all- test results only show results for what has been tested for. We can't simply test every single thing out there in one standard test.


3- Pain and suffering are very subjective.

What can be totally easy for one person might be hell for another person. No two people with the same diagnosis are exactly the same. While one person might handle the situation seemingly well, another might suffer tremendously, even if the diagnosis or the symptoms may seem "not that serious" to us. We should not judge how much a person is "allowed" to suffer.

Maybe they didn't find a good way to cope with their symptoms yet, or are struggling to find acceptance, but finding that is extremely hard and it is not a stranger's job to judge a person on how well they handle their symptoms.

And while others might have it worse, that doesn't make ones suffering any better in that moment.


4- Only because someone looks fine, doesn't mean they are

What looks good and what looks bad, who looks healthy and who looks sick, is extremely subjective. It should go without saying that you simply can't see someones suffering on the outside. But just because the pain isn't visible on the outside, doesn't mean it's not there.


To some people I may look really pale and sick, while others who see me on the same day tell me I look fresh and pretty. Some people may find I look boney and thin, while others may think my body looks fine. The truth is- none of this should matter. I don't have to "prove" that I'm sick by looking sick. I have my doctors' documents for that.

I can't spend my time trying to fit into a stereotype that is so subjective for everyone! People can't expect me to neglect my appearance, to not wash my hair for weeks and to run around in dirty clothes, so that maybe people are more inclined to believe me- or not! I still deserve to feel good in my own skin, to have some dignity. And the fact that I can still choose nice clothing and hold a makeup-brush in my hand, doesn't mean my symptoms aren't there.



Taking patients seriously will help them in so many ways in the long run!

I don't think one person in the world has ever been healed because they just realized they need to "snap out of it". So much can be destroyed when patients are given the feeling that they are not believed. When someone is suffering and they are made to feel ashamed about themselves, they might end up feeling depressed, their self-esteem might suffer and the bad associations may lead to them not wanting to seek medical care at all.


But so much can be gained if we take people seriously and encourage them, that they deserve all the help that they can get. The healing process may be much more successful or easy, if the doctor is trusted completely and is given all the important information.

When people aren't scared to seek help, they are more likely to find, what's best for them.

And in the end we all deserve to be taken seriously and to have the best quality of life possible. No matter, what we look like.


#chronicillness #chronicfatiguesyndrome #mecfs #invisibleillness


 

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