ES Lifestyle Newsletter

Having any kind of illness is tough but add to that the fact of it being invisible, at times it can seem impossible to cope with.

In the UK today, one in seven people are dealing with chronic ‘invisible’ pain.

A former model, on sight she epitomes ‘glowing health’, but due to a myriad of hidden conditions she often can’t leave the house and on some days, even showering is a struggle. Day-to-day, she battles intense pain, heart palpitations, body dislocations, vertigo, double vision, tinnitus and the constant feeling that her neck won’t keep her head stable.

If she past you on the street you would have no idea.

Below, she opens up about being part of a community who live with ‘invisible conditions’ and the hurdles she’s had to overcome to get treatment.

I suffer from Hypermobile Ehlers-Danlos Syndrome, Syringomyelia, Chiari malformation and Craniocervical Instability (a mouthful I know) which are rare disorders that cause a constellation of debilitating symptoms. I look healthy from the outside, but inside, my brain is crushing down into my spinal canal, which causes a range of pains and problems.

It’s actually taken a long time to be able to identify my conditions. Apart from a few minor knee dislocations, I was a really happy and healthy child with no complaints. My symptoms developed around the age of 13, after I fell down a staircase. We tried everything and despite my body going haywire, no tests revealed there was anything wrong.

At 23, I had my first MRI scan which showed a bubble of fluid called a syrinx inside my spinal cord. This explained some pain but not the full extent of my symptoms. It wasn’t until I had an upright MRI that the true scope was revealed and I got my various diagnoses. All in all, it took 14 years to get diagnosed, in part because of the complexity of my condition, and in part because of being repeatedly dismissed.

What are the biggest challenges of having an invisible condition?

Invisibility is perhaps the most difficult part because you feel you have to prove the immensity of your daily struggle to everyone.

People will say things like “You’re too young to be ill” or “You don’t look sick?”. Others say “It’s all in your head” or that you’re a hypochondriac. This is incredibly isolating because when you’re suffering all you want is medical validation and support from those around you. This is why a diagnosis can be so important in more ways than one for anyone living in this situation.

Sometimes you have to wear a C-collar, how do people react differently to you?

I remember being amazed by the way people treated me the first time I wore my C-collar in public. I went from being invisible to a magnet for people because I suddenly “looked” unwell.

Once when I was in a shop, I was completely taken aback when the woman who worked there took the items from my hands and brought me to the front of the queue — I was confused but then realised it was because she saw the brace. I’ve experienced this kind of reaction in all sorts of situations.

Put it this way: on days I find it hard to stand up for any length of time, if I don’t have a C-collar on and ask for the disability seat on public transport, I often get scathing looks.

What would you say to encourage others living with invisible illnesses?

Despite what anyone says, never give up. Remember that you are not your pain and don’t feel guilty. Listen to your inner voice because you know your own body more than anyone else, so if something doesn’t feel right, get it checked. If you don’t find an answer, check again. And rest, even if there are a million things to be done. It will be much harder if you keep pushing through. It’s okay not to feel okay.

What should people know when meeting someone with a hidden illness?

Don’t judge a book by its cover. As tempting as it is, try not to point out how healthy the person looks: it might be well intentioned, but it can feel like you’re not being taken seriously.

Practice empathy over sympathy and let their voice be heard. Try not to feel offended if the person keeps cancelling plans — they want to be there with you more than you know. Also, don’t be afraid to ask more about the nitty gritty aspects of their illness and what they are going through, as it will help them feel better understood.

What about those who are supporting people with hidden illnesses?

Know that their pain is not your fault. As difficult as it can be, sometimes you won’t be able to make their pain better but just know that your presence alone can help lift their spirits. Taking baby steps is key and remember to make some time for yourself too.

What does the future look like for you at the moment?

I’m currently in a state of limbo waiting to get surgery that would essentially screw my head back on but at a cost of $169,000. Unfortunately the treatments aren’t available in the UK for EDS patients so I’m crowdfunding to get it done in New York. Although there’s no cure for these disorders, this option can at least ensure a better quality of life.

Day-to-day I’m a freelance writer and editor and can luckily work flexible hours on the days my symptoms really flare up. My main dream has always been to make documentaries. I have every intention of cracking on with that once I’ve had the operation and my neck is stable. I’ll eventually need my whole neck fused somewhere down the road but I’ll cross that bridge when I come to it.

You can find out more about Tori’s Story and the ways in which you can support her here.