Many of us struggle with self image and what we believe we ‘should’ look like. What do you do if your genes give you something which means people say you are ’90 degrees from normal’? Natalie Jones shares her journey with Ehlers Danlos Syndrome. Read her story
I had a gorgeous bakery in Nice, 50/50 with my then partner. Unfortunately in 3 years we had two bombs, 4 shootings, and the last straw was when a lone mad man drove a truck into the crowd and killed 82 people. To make it worse the press painted it as a terrorist attack because he was Algerian.
Nice is the 3rd poorest region in France and relies on tourist trade, and with the terrorist reports everyone cancelled their bookings for the summer.
We survived winter on our summer takings and having less than 8% of the previous year meant we were sunk.
We were also in year 3 when the taxes all ramp up on businesses, and my bi-polar partner turned out to have been sleeping around and stealing money from the company accounts.
He didn’t want to stay in France, and I refused to go back to the U.K. Having friends (or so I thought) near Granada we made the move. When we got to Spain it turned out to be more lies from my ex, but we were there, and I was determined to try to make a go of it.
And where are you now?
I live above La Linea in a gated community called Vista Hermosa or beautiful views, which they certainly are. Out over the Mediterranean and towards Gibraltar on one side and the green hills and Mirador on the other. It is quiet, calm, safe and sociable with a mix of nationalities. For those that need work Gibraltar has less than 1% unemployment and La Linea bucks the trend in Andalucia of 25% unemployment by its proximity.
What was the biggest challenge for your move?
Learning enough Spanish! I am quite adept at languages, but my ex kept me isolated for the first couple of years, using our only vehicle to get to his job and housing us in very remote properties because they were cheap and I was recovering from cancer at the time. I’m also disabled, with something called Ehlers Danlos Syndrome, which is a genetic fault with collagen production. It means I have to have health coverage and I had none after Brexit happened. So I had trouble getting around and meeting people and networking was impossible.
Do you have any advice for Women thinking about making the move?
Do your homework and plan for the worst. Not a cursory glance and get a Gestoria, because Gestorias are not reliable and whether you are single or in a couple you never know what tomorrow will bring. I’ve heard so many awful stories of people widowed out here who wanted to stay but who simply didn’t know how, didn’t speak any Spanish, couldn’t access support or find work and ended up rehoming pets and leaving.
My ex walked out on me after we moved near to Gibraltar, my home before Vista Hermosa. Covid was actually a lucky break because he left me with no job and no money. I didn’t even have my name on the lease; but with Covid I could not be legally evicted and it gave me the time I needed to find a job. It was a very stressful 12+ months trying to find work, get my TIE, renew my passport, get the car through it’s ITV, change my license, etc.
I was lucky enough to find an amazing woman, Cara Maxwell-Gainford who owns Awesome Recruitment, who helped me find work, and a dear friend near Granada, Lucy Hayes-Logan, that I met while working for about a month in an immersive English school. She is fluent in Spanish and works for her local Ajuntamiento, and she has been my go to for urgent, on the fly translations in Spanish offices and with doctors, and getting my life sorted out.
Also, before you move visit and make the connections for later, because you never know who will be able to help you. Certainly never be afraid to ask for help, because it’s out there.
Tell us about your life in Spain
I have been working as administrative support handling Legal Claims and tracking their progress whilst writing up processes to enable the company to transfer their admin work to the Phillipines. I also helped with document merges, sorting database information, checking legal submissions to courts and banks, ensuring costs are tracked, helping the accountant, creating company policies, liaising with Clients and lots more.
It has certainly been a varied job, but with the work drying up and what there is being passed to the Phillipines company they have simply run out of work and I find myself looking again.
This time I am looking for freelance work and multiple clients as well as a full time job, to ensure I don’t fall into this gap again! Having kept books for companies before and training in AAT I can work remotely on accounts to save companies money whilst I increase my Client base, and go to the office when I have a full time job.
As well as admin and bookkeeping I also cover social media management and basic website creation which I am already getting involved with for Gibraltar’s top Hairdresser, Janice, of Janice Hair and Beauty. She does my hair, and her nail tech Charli does my nails, so when she needed help it seemed obvious to put my skills at her disposal.
In my remaining time I am putting my energy and skills to use on behalf of people with Ehlers Danlos Syndrome. It is a genetic condition that 1 in every 5,000 people are born with. At its most basic it is fragile and overly stretchy collagen.
This can mean super bendy joints or it can mean lifelong pain and exhaustion with a shortened life span. The mitral valve of the heart is made of pure collagen, and is the reason why some EDS babies are still born or die in infancy.
The structure of the brain is affected too and many with EDS also have issues ranging from depression to ASD or ADHD.
At 1 in 5,000 we are virtually invisible in the medical and scientific communities. A diagnosis was only written up on the condition in 1979, and it has already been changed and reclassified 5 times that I am aware of.
Those with EDS are called Zebras. In medicine new doctors are taught if you hear hooves think horses not zebras, but we are the zebra, the rare illness, and we often find we have to educate our doctors who may be completely unaware of EDS. We also develop significant stretch marks across our bodies when we have our growth spurts, leaving us feeling like we have zebra stripes.
We suffer regular and recurring soft tissue injuries and dislocations from things like standing up, opening jars, stirring tea and other ridiculous things, but our super low blood pressure and ability to hyper focus are both real bonuses. We also tend to be fast learners who learn for fun and lean towards being polymaths. Many of us certainly edge towards the savant side and some are true geniuses.
People with EDS in the public eye who speak for us all include the musician and singer Iggy Pop actress and presenter Jameela Jamil, Drag Race contestant Yvie Oddly and para triathlete Alyssa Seely. Yet most people know about EDS because of a cat with it! That’s when your invisible illness really is, well, invisible.
One of the bits that has really upset me with EDS is that as we get older our faces melt like wax as we age. Our eyelids sag over our eyes and block our vision, and our jowels make us look like basset hounds. After having my passport and ID photos taken and seeing how bad my face had become I started to put my spare energy into researching what can be done to improve our appearance.
It may seem fluffy to some, but women are often treated as invisible as soon as their looks go. Apparently a good brain is not enough if you don’t look like a centrefold or supermodel. Women in particular have enough problems with self esteem today, and needing to find work in later years means we have to do our best to still look good.
EDS already means we have to watch our weight and stay as fit as we can to avoid injuries, and we are used to having to come up with coping mechanisms that are out of the ordinary and finding new ways of doing things that work for us.
Often what doctors insist on is more harmful than listening to our bodies. Strapping or bracing out joints for example. We strap for exercise or exertion so we can stay fit, but doctors tell us to strap joints all the time, which actually results in weaknesses. They tell us never to do yoga, but many of us only manage to be upright and walking around because of low impact exercises such as yoga or Pilates.
To cap it all we are not good candidates for surgery. We have problems with anaesthesia, our wounds heal badly and often prolapse, and face lifts can not only be ineffective, we can end up looking worse. So if I was going to effect a change I had to go back to square one and rethink skincare to be EDS specific.
I started by looking at what products are now available. Skincare has changed so much in the last 20-30 years, and we know so much more now. But I also added in what I know about my type of collagen and how it responds along with what I have learned about body building, strength training and other muscle disciplines to come up with a regime that is safe for fragile skin and actually works.
This has resulted in a visible improvement in my face, including having visible eyelids for the first time in my life, and is now my main reason for extending my social media networks. It’s time to share it with the rest of the EDS world, to help us avoid surgery for longer and look and feel better about ourselves.
This is why I am somewhat evangelical about teaching the world about EDS, so I can reach my fellow Zebras and help them, and why I am filling in this interview
Something you are grateful for?
I am grateful every day for so much, for my friends, for everyone who has passed through my life, for all those who have either enhanced my life or taught me something, and especially for those who have helped me stay sane and stay in Spain. My greatest achievement is overcoming life’s obstacles and to have been able to achieve so much despite them, again often with the help of others.
My life has often been difficult, painful and stressful, but I have met so many amazing people who have not hesitated to hold out there hand to help me up when I fall – literally and metaphorically. It eases my life considerably and I can never repay them enough, although I do my best to pay it forward to others less fortunate.
Who would be at your special dinner party?
Oh wow! Big dinner party…. 😂
Everyone I consider to be a friend or who has helped me or made my life better by their presence would be there for a start.
I would have to have Messers Ehlers and Danlos, the Danish and French scientists who first classified EDS and I would love to talk to them about how it has been perceived and the changes in its definition over the decades.
I’d love to have my mother there, too, so I could get one last hug and let her know that she was a zebra, too. She died several years before I got my diagnosis and I miss her so much.
I could fill Wembley with all the artists, musicians, entertainers, writers, scientists, inventors, and leaders in their field that I would love to talk to, because I find so many people incredibly interesting and entertaining, so I guess limiting the guests would be a good idea.
But if I could I would want to invite the whole global EDS community so we could share our latest advances and tips of living with EDS and decide amongst ourselves how we wanted to be treated, what we needed doctors to stop doing and so we could all learn what really works. They would be the best guests, because we could all help each other.
What’s your secret weapon or accomplishment?
This might sound odd, but having a specific obstacle that makes my life harder has resulted in making me stronger, more willing to explore, and with the chance of dying early or being crippled in later life it has meant I had tried as many things as possible.
Do you have a favourite quote?
One thing you had to bring to Spain and could never give away?
My cats. When I was very ill they were my comfort and joy. When I was depressed and ready to give up they gave me a reason to go on. When others abandoned me they curled up on me and showed me how much they loved me.
Something you would tell your younger self?
It is a phrase from my Jewish faith, this too shall pass. I spent so many years not knowing why I struggled so much, not realising that my own genes had betrayed me and set me up with a body that would let me down repeatedly, but at the same time given me a brain that could tackle everything. As I became aware of what and why I was different I realised that what I had gone through, the grieving for aspirations I could never attain, would never have been so painful. If I could have been diagnosed from the start my life could have been so much happier.
Thank you Natalie Jones where can we find out more?
On Facebook page 90 Degrees From Normal
and there will be more to come as I get the chance to draw up my findings and share my skincare tips and makeup.