Death & Life

Patient Expert

Twice, rheumatoid arthritis has tried to kill me.

I was 12, almost 13, the first time, when it went systemic and starting attacking my heart and my spleen and there was a bad case of pneumonia, as well. I don't remember much, just moments of memory, strung together with wide spaces in between. Waking up to see my father sitting by my bed, elbows on his knees, looking down on the floor and then falling into sleep again. The daily chest x-ray, barely able to sit on my own for the 30 seconds before the nurse came back into the room to help me. Surreal interactions with people I didn't know that in retrospect was a fever delirium. And afterwards, learning to walk again, trying to pull myself up two steps in the physiotherapy department, weak as a kitten.

Prednisone saved my life but altered my body, stopped my growth at a time when it had just begun and to this day, I'm shorter than I should be, arms and legs not quite long enough, slightly disproportionate to my body.

The second time RA tried to kill me was six years ago. Caught up in an uncontrollable flare, living far within the pain, I was waiting for funding for Enbrel and as the bureaucracy slowly ground on, so did the RA, taking more and more of my life. Taking more of me. Strength, ability, joy and the capacity for laughter slowly leached out of me, my life drifting through my hands like sand and it became clear that one way or another, my life was ending. I knew that if this process wasn't stopped, if something wasn't done, I would soon be irretrievably locked within deformities and fusing that would end my ability to live independently, would mean a nursing home. Or perhaps I would be dead, for the overwhelming pain, bonecrushing fatigue and indescribable feeling of something being Very Wrong Indeed made me wonder if I had terminal RA. Just before Christmas in 2004, I reached a point where I could get up each morning only by promising myself that if a solution hadn't been found by the summer, it would be OK to give up. To kill myself.

Would I have done it? I don't know - maybe I would have found some way of scrounging up enough hope to keep going or maybe not. But Enbrel saved my life, gave me a second chance and every day, I do my best to honor that.

Today, 35 years later, being so seriously ill with RA as I was when I was a child is rare. Today, despite advances in treatment that has completely changed the prognosis of living with RA, thoughts of suicide still happen for those who live with the disease.

We have all been in the dark place, where we do battle with depression and grief, living within a body that has betrayed you, a life changed, shapes of sorrow surround you, as ephemeral as smoke, yet persistent. And sometimes, the shapes solidify, change to despair and desperation and you are hemmed in by the feeling of hopelessness, the feeling that it will never get better and the fear starts to work on you. It is not that you want to die, it is just that you want the pain to end. The pain that makes everything difficult, the pain that means you have to psych yourself up before you get out of bed in the morning and still cry as you do, the pain that accompanies each breath spirals deep within you, consumes all that you are, filling each nook and cranny in your soul until you have ceased to be you and have become Pain.

This is the moment when you most need help, but it is also when you are most likely to be convinced you cannot be helped. What do you do if you find yourself in a place without light, the dark so black you cannot find your way out?

Reach out anyway. Talk to your family, a trusted friend, your minister. Join the HealthCentral community on our Depression site , read the posts there, because knowing your feelings are symptoms and not reality helps in taking the next step. Speak to your doctor, be honest about your feelings and tell them how RA is stealing your life, ask for help, be it antidepressants, a referral to a mental health professional, find a therapist yourself or talk to your rheumatologist about treatment options to get your disease controlled. If you're overwhelmed in the middle of the night, call a suicide prevention hotline like 1-800-SUICIDE, 1-800-273-TALK or The Boys and Girls Town National Hotline at 1-800-448-3000. If talking won't do and you know that you need someone immediately, call 911 or go to the nearest emergency room.

No matter how alone you feel, someone out there will take your hand and get you through it, help you get back into the light. And take it from me, once you're there, once the sun shines again and the world is no longer grey, the beauty of life will be more intense than it ever was before.

You can read more of Lene's writing on The Seated View .