A.S. Face 0068: Lilith Eden

My name is Lilith Eden, I’m 48 and single. I have 4 wonderful children, I live in Belgium, and I am a face of Ankylosing Spondylitis.

I remember pain, feeling ill.

And Parents who told me I couldn’t be in pain and I couldn’t be sick – because I was a child.

A doctor at school when I was seven who asked me, ‘has anyone told you that your little heart is sick?’

An old family doctor who told me, ‘I’m afraid that when you grow up you’ll be sick and suffer from R A

Angry school teachers, because I couldn’t stay awake in the classroom, after sleepless nights due to the pain.

Gym teachers and kids mocking me because there were so many things I just couldn’t do, and telling me I was so slow at everything

A dead grandmother who was so bent they had to break her spine so they could lay her in her coffin.

Another school doctor, when I was sixteen, who said that I wouldn’t have a long life because of my heart condition.

Parents who said there was nothing wrong with my heart and called the doctor stupid.

A military doctor when I lived in Germany, who came to my house twice a day to ensure I was using the eye drops, as my uveitis wasn’t healing properly.

Pelvic instability when I was pregnant

A husband who told me that he didn’t want a wife who was always sick and in pain.

Back pain that made me crawl on my hands and knees.

A morning when I couldn’t get out of bed because of my neck pain.

Years of unbearable pain in my legs and a doctor who just prescribed magnesium for it.

A locked knee and surgery when I was forty three.

Epstein-Barr at forty four, along with the dizziness, fatigue and forgetfulness.

Almost unable to walk for three days after sex, and my boyfriend saying I didn’t seem interested anymore.

Forcing myself to stand straight, despite the fever, shaking and never ever ending fatigue.

Falling over and people assuming I was drunk.

The total exhaustion

Crying to a doctor while telling him that I couldn’t stand it anymore, and that there was something very wrong with me, and his reply: would I like to see a psych

My boss saying I was lazy and I would be fired if I didn’t work harder

At 46 finally finding a rheumatologist who kind of believed me, but didn’t listen to the full story, as he didn’t have enough time.

After being diagnosed with Ankylosing Spondylitis, tell my boss who said, ’oh, that’s easy to cure, you’ll be back in no time.’

How others say that their back hurts too, I don’t explain anymore.

Disability, no more disability, unemployment, getting poor, unable to do anything about it.

I’m Lilith Eden, I’m a Face of Ankylosing Spondylitis, a disease that has taught me all about love…..and hate.


12 Responses to “A.S. Face 0068: Lilith Eden”

  1. Hello Lilith,

    I am so sorry it took your doctors so long to know what you were really suffering from. Isn’t that the story of our AS life!! There is a desperate need for physicians to know what AS is and what to look for when they get patients with back pains etc. and take us more seriously in diagnosing their patients! properly!! I myself have had back pains all my life as well, but doctors never looked further into it. I admire you as a person, having 4 children, and still able to stand tall as you can!! HOPE is all we have for a cure, and keep looking forward with JOY!
    ** Gentle HUGS**
    Hedy Francois

  2. I see my self in some parts of your story ….. big hug from a SA face that does not have your courage to show up …. be strong

  3. Good to see you here Lilith xxxx

  4. Dear Lilith,
    Thank you so much for sharing your story with us. Thank you so much for your help and support in reaching my goal of 1000 faces. You are right this disease does teach us about hate and love.
    Sincerely Cookie

  5. lilith, wat een intriest verhaal vind ik dit,maar toch ben jij een zéér sterke vrouw wens jouw het allerbeste toe.Liefs chantal
    ps:je vind me terug bij de groep van bechterew facebook)

  6. Hey Lilith,
    Wat een triest verhaal 😦
    Hoe is het tegenwoordig met je? Ben je aan een TNF blokker?



  7. Hey Wendy,

    ik neem arcoxia, tramadol retard en tradonal odis, vind dat het echt niet uitstekend gaat, langer dan twee uur op goede dagen kan ik niet op de been blijven. samen met mijn dochter naar de supermarkt of een kort bezoekje bij mijn moeder in het rustoord moet ik dagenlang bekopen. Ja, binnen mijn muren gaat het nog net… Naast de gebruikelijke nek en rugpijn heb ik ook veel last van mijn handen, mijn ogen, concentratie en geheugen, … ik herken mezelf niet meer. En jij ? medicatie ? Draag goed zorg voor jezelf hoor, je moet nog heel lang, heel veel kunnen doen !


  8. Hello!

    First of all I want you to know how deeply sorry I am for everything you’ve had to go through in your lifetime!! You will be kept in my prayers and you’re an inspiration to all! My fiancé recently has been diagnosed with ankylosing spondylitis following a 3 level spinal fusion. He is in pain management to help his pain after his surgery and now is about to be put on meds for the spondylitis. He’s in agonizing pain 24/7. I try my best to do any and everything for him. He is the love of my life! He stays so fatigued, hurting, sick, and just plain “zombie like.” I would just like to know if there is anything I can do extra or have advice how I could help him any? Thank you so much. It’s very appreciated 🙂

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