Our lives with Invisible Illness

Mental illness. Physical disability. Chronic illness. No matter what end of the spectrum an illness falls on, there’s one thing that they all have in common: they cannot be generalised.

There are no rules to having an illness. There is no such thing as ‘looking ill’, and no way to characterise someone who has an illness; because at the end of the day, a person having an illness does not define who they are as a human being.

As a testimony to this, these three amazing women have stepped up to tell their stories about living with a category of illnesses which are commonly misunderstood: the ones that cannot be seen at first glance.

My life with BPD

IMG_4274From a young age I have always suffered with my emotions and relationships. It wasn’t until I was eighteen that I got diagnosed with borderline personality disorder. In simple terms, this means I feel things more intensely than others and I’m consistently worrying about abandonment.

My illness is invisible which means most people have no idea, especially when they first meet me. This can make things hard as its something I find challenging to cover up. I worry that people judge me, or see me as ‘different’ or ‘odd’. It would be easier to let them know in the first instance, however the word ‘borderline’ scares people immediately.

When people hear my diagnosis they instantly think words like on-edge, crazy, unstable. This is really not the case. Yes, I feel things more intensely but that’s not just negative emotions. I feel empathy for people more than the average person. I’m not just happy, I’m ecstatic. I have all these positive emotions heightened too, which I think makes them extra positive.

I’ve come to the conclusion that invisible illness or not I will be judged; unfortunately, that’s how the world works. Although I may be ‘different’ I’ve never felt so comfortable in my own skin. BPD makes me who I am, and I wouldn’t change it for the world.

– Paige Ellie Lewis

My life with BAM

LauraI’m Laura, I’m 30, living in London and I have an invisible illness. I have a bowel disease called Bile Salt Malabsorption (BAM), which is relatively unknown. It causes chronic diarrhoea, intense pain, vitamin deficiencies, chronic fatigue, and weight gain to name a few.

I suffered for 18 years, doctors kept telling me I just had IBS. I was finally diagnosed in December 2017 and given the correct medication. Before that, I could go to the bathroom up to 30 times a day, and constantly feel awful; I did that whilst trying to hold down a job, and maintain some normality! My life revolves around locating toilets and being near a toilet pretty much 24/7 just in case. BAM is a recognised disability and something I will have forever.

My illness is perceived as something to be ashamed of, and I’m almost looked down on for using a public toilet. Unfortunately, I don’t have a lot of choice, and I don’t know why it’s so stigmatised. Everyone has to do it, and that’s what a toilet is for. I have been on the receiving end of some very cruel comments and behaviour, as if being ill in public isn’t hard enough already.

I’m also entitled to use a disabled/accessible toilet. I’ve found I’m perceived as not being entitled to use those toilets as I “look fine.” Thankfully the “not every disability is visible” signs are being placed on disabled/accessible toilets which helps. I hope this raises some awareness for people with bowel conditions, and reminds people to always be kind, you never know what someone else is going through.

Laura Gentles

My Life with Ménière’sIMG_20180812_125230_resized_20180926_092058485

Hi, my names May and I’ve been asked to talk about an illness that is invisible to most people; I suffer with a condition called Ménière’s disease, an inner ear condition causing symptoms such as vertigo, sickness, vomiting, fullness of the ears, and sweating. It’s a very debilitating illness, and it can strike at anytime.

My day to day life can be extremely difficult: having attacks of vertigo, and sickness regularly lasting a few hours at a time, which leads to extreme exhaustion. You also have to get to somewhere safe due to risk of injury, not to mention that this illness can make you feel very isolated: I get anxious before going out in fear an attack will come on, so I often shy away from social occasions or events.

I have suffered with this invisible illness for 20 years and there is still very little awareness about it. It has had a negative impact on my life with relationships, jobs, people asking ‘why I’m not married with children’ and saying things like ‘just get over it’ or “its just a bit if dizziness, you’ll be fine’: I really wish it was that simple.

I want to help others to understand the condition, and to just think that perhaps if you see someone wobbling they may have Ménière’s and need some help. Im very lucky I have an amazing, supportive, and caring family, but some people don’t have that, leaving them on their own fighting this. I also won’t let it define me and, although I severely struggle, I try my hardest to attempt different things, including taking part in a pageant this year; even though I was very dizzy I wanted to complete it, and I did so I’m proud of my achievements. Thank you for reading about Ménière’s disease, and if you would like to know more you can go to this website with lots of helpful information about the condition, along with some amazing caring people to talk you through it.

May Eileen 

Do you look at the pictures of the women above and automatically think ‘illness’? No; because the truth is, you can’t make an assumption about anyone. These are real women, with real lives and they are more than an illness that only makes up one tiny part of who they are.  So the next time you see someone using a disabled toilet who ‘doesn’t seem ill’; or make some crass joke about mental illness and think it’s fine just because ‘you don’t mean anything by it’… remember these women. Remember the stories you have read here, and keep in mind that everyone in the world has their own individual story: one that can’t be defined by outward appearance, snap judgments or first impressions.

One comment

  1. Thanks for sharing this. I know what it’s like to have invisible illnesses. From depression and anxiety to chronic insomnia. People just don’t know what you’re going through all the time and I think it makes you more empathetic!

    happilyhavingnoideawhatimdoing.wordpress.com

    Liked by 1 person

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