Thoughts of Suicide and RA
Chronic illness and depression go hand-in-hand and so it is with RA. According to Johns Hopkins, chronic pain exacerbates depression and from an intellectual standpoint, it’s not surprising that some of those people who are depressed consider suicide. And some do more than consider. But this is not an intellectual post that delves into the research. This post is very personal.
Nine years ago, I was in the middle of a horrendous flare and waiting for funding so I could start a biologic. Nine years ago, the only way I could get through each day was to set a limit on how long I would have to endure the pain that enveloped me like an oil slick every minute of every day. I set a limit of six months, promising myself that if things weren’t better by then, it would be okay to do a voluntary exit. To kill myself. I didn’t want to die, but I could see no other way out.
I didn’t talk too much about how deep my depression was and not just because it didn’t feel like depression — it was too deep for that. I had only enough energy to get through each day and that only barely, so there wasn’t much left over for talking. In the last week, I have found out just how complete my silence was — several people who were then and are now closest to me had no idea.
I’ve wondered why I didn’t say anything and have come up with two reasons.
First, from a purely practical perspective I didn’t want anyone to know. If they did, they might take away my codeine. It was a really important part of my pain management, but more than that, I was saving it up to use if I had to go. Without my codeine, I would no longer have the option that was the only thing that kept me going through the hell my life had become.
Second, and much less practical, facing something as stark and profound as the end of your life is a very solitary experience. When you are saying goodbye to all the small pieces that make up your life, one at a time, slowly and for real, it’s not something in which you can have company. Going deep within small moments, absorbing them, experiencing the importance they’ve had and finding a way to let them go is something you can only do on your own. There are a few experiences in this life that are supremely and completely individual and dying is one of them. When you are that close to the edge, distractions obscure you focus and other people’s presence are a distraction.
In retrospect, I should have told someone. In the bright light of day and out the other side of the abyss, I look back upon that time and know that had I shared how I was feeling, help would’ve been right there. Maybe my rheumatologist could have expedited the funding — nothing as motivating as a suicidal patient, one should think — or maybe she could have found something to bridge me until the money was available. Prednisone could have been an option, in some cases a necessary evil and that situation certainly justified it. My family doctor could have offered antidepressants, bigger painkillers and referrals to mental health professionals. My friends and family could have offered even more support than they were already giving me.
What pulls us out and away from the bridge, from the edge of the subway platform and what makes us leave the rope or pills behind is different within each of us. For me it was finding a medication that worked. For others, it’s a small inside voice that says get help. Now.
And this is what I hope I have learned from living through it: that should I ever get back to that place of darkness again, I will ask for help. Even if I can’t imagine anyone being able to help me — because you don’t, when life is that desperate — I will ask for it. And I will continue asking until I get it.
If you are in the dark place and feel the only way to end the pain is to end your life, please seek help. Tell your doctor, tell a loved one, call a suicide prevention hotline (see below). I know it may not occur to you to seek help or it may scare you to get help, but do it anyway. I can tell you from personal experience that once you get that help, you’ll be glad you did.
Find your local suicide prevention hotline anywhere in the world at befrienders.org.
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Thanks Lene.
You saved somebody today. I have no idea who and no doubt it's true. Thank you for putting something so personal out there so publicly.
And to whoever that person may be, I wish you all the joy that you will find ahead in its own time. It's real, it's there, it's waiting, and it's worth all that it will take to get there to where you can find it again.
Sincere thanks for your honesty and openness. Inclusively, RA and other autoimmune diseases are certainly reason for wanting relief in whatever form we can find. Thankfully I too have that inner voice that ethically, morally and logically prevents me from going too deep in the sea of darkness. Seeking help is the knowledge that we “need” the help. It is just not so cut and dry and you described it so well. Again, thank you.
Its good to know other people feel like i did 3 years ago i know i am not alone luckily i came out the dark tunnel and have never had these thoughts again but it still troubles me to think i even had those feelings , thank u for sharing your story
All great advice , I'm sure. Alas , I've been here long enough.,, been denied by family and friends alike. I not only lost the life I busted my ass for, but gave it away. Those who truly know me could care less, those that don't are apathetic. And it is sad that I'have spent my last holiday with those that I love dearly, abandoned any hope of getting better… But im the only one who is sad. I don't want help. Just to wake up dead
Fontaine – please don't give up. Not wanting help is the point where talking to someone is most important. Please talk to your doctor or call a hotline. There is a light for you. It will come.
Dear Lene, I had RA for 17 yrs now. Had gone thru hell with pain , depression n few damages to joints. Glad I find yr blog n yr writings really inspires . Will b back for more. Keep up the gd work n thks a million.
Thank you, Lene. It is ESSENTIAL that everyone gets more honest about the fact of suicidal thoughts for every single person who faces severe, chronic illness. The everyone includes medical professionals who somehow pathologize perfectly sane people who see no other option but suicide. There is nothing wrong with these feelings of hopelessness, despair, depression, and losing sight of better days when one suffers with a severe disease.
I am not an advocate of suicide, at all. The consequences for survivors is horrendous. My own belief is that we are all so inter-connected that what happens in each person's life has a profound effect on all those involved.
I am an advocate for honest and open communication so comprehensive care that addresses the whole person is provided. Unfortunately, medical care can either support the dignity and humanity of each person or inflict incalculable harm. I've had both experiences coping with severe, aggressive, erosive RA that is not responding well to current treatment. I have a great medical team now and remain hopeful.
Wishing everyone the awareness that we are never alone, despite how it feels at times. I agree with Lene, please do not give up and do reach for help until the right help arrives !!
My mother suffered as well. Until it grabbed me I never understood her pain or wish to “move on”. She didn't take her own life exactly. She just sat on the bed for 10 years waiting until it would be over. I get it now. I don't have that option because I had my children late in life and they are only in college now. They need me around so I will try to hold on. Some days, though it's hard to keep on keeping on.
I often pray that it would all end. I totally get it and think there is nothing wrong with it. I think that every person must decide for themselves, but I support assisted suicide for those who are in pain and suffering.
Just thank you.
Thank-you!
<3
just a note – I went to the Befriendefrs website as a matter of interest, not need, and was told “There are 0 helplines in towns, in states/counties in Canada. “
Thank you Lene so much for writing about this. Suicide has touched my life and as a result I won't give myself that option but sometimes knowing there is a way to end the pain is comfort in itself. Thank you so much for your honesty and insight. 🙂
Thank you for this Lene! Very helpful as I face a dark side in my life
sorry to hear you’re having a rough time, Pam. Please let me know if I can help in any other way.