Living with Chronic Pain, as a rule, is a private emotional affair that you cannot end nor want to continue. It's a torturous, intensely personal journey that you cover, hide, dare not display to anyone for fear of their judgment. If only I looked as good as she does on steroids. If only I could manage the way he does with that ankle problem. If only I tried harder. If only...
Coping becomes that thing you do really well that no one really gets because they can't see you do it. And, as a society, we expect people to just get on with it. To cope. Because no one likes a complainer.
And, in that fear of becoming a dreaded complainer, not only do we cope, but we allow other people to tell us HOW to cope. When to cope. How WELL to cope.
We never give ourselves permission to feel the pain and often doctors will tell us that if we only just did something to take our minds off the pain, well, silly patient, you wouldn't feel it so much. You're over sensitive. You're making a mountain out of a molehill. You can't possibly be in that kind of pain and still LIVE a life.
When did we decide to allow others to negotiate our pain?
Pain exists in all forms, mental, physical, emotional, spiritual. These are my battles with pain.
Chronic Pain
When you're ill, you DO learn to cope. It's almost as if dealing with pain and the fall out of being ill becomes second nature, a full-time job for the soul.
But not only do we allow others to tell us how much pain we physically feel, we allow them to tell us to move on. To get over it. To NOT feel the pain of the losses we are constantly meeting and accepting.
You learn to smile and nod and hide how much you hurt. Because you're doing your best to cope. With pain. With fear. With regret. With disdain. With sorrow. With grief. With momentary flashes of acceptance. With the loss of the life you once dared to dream. With the prevailing uncertainty of tomorrow.
When Sophie was a baby, she was in great distress. The regurgitation her body endured was almost endless and she would make these faces. People kept dismissing what was obvious pain by telling us it was 'wind' or 'baby emotions'.
We took her to at least 6 different doctors before she was diagnosed with reflux. And in that time I was told I was a 'neurotic first time mother' and that she was mentally retarded. I didn't care if she really was mentally retarded, I just wanted her pain to end.
And I wanted, more than anything in the whole world, for someone to believe my baby was in pain.
I came across what's known as the FLACC pain scale. I printed it out and I took it to our specialist appointment with a paed. Here you can't just go to a paed, they are specialist hospital doctors. You need to be referred.
I printed it out, took it with me, and on the verge of a complete and total break with reality, pointed to the faces and cried: This. Is. Her.
After my twin loss, I thought about those faces. And I wished there was a pain scale. So that when someone asked me how I felt, I could point to the face and they would just accept it.
I was in pain.
Be it physical pain. Be it mental pain, I just wanted someone to nod and accept that I had endured a huge loss (the twin babies, my life, my ability to function and walk and feed myself). But it seemed all anyone really did was skirt around the issue.
I know they were doing what felt like the right thing, and I appreciate the extent they went to to preserve whatever sanity I had left, but some took it further.
By not only negotiating my pain (they weren't REAL babies, so you shouldn't be sad), they went as far as to state that they weren't even real. I actually had the displeasure of meeting an acquaintance at a Farmer's Market in Blenheim and she told me: "I thought when you said you lost twins they were like 6 months old. What you had was a miscarriage. We all have miscarriages. They don't count. You should be glad you don't have cancer!!"
She told me this days after I started methotrexate; the drug being 'effective for the treatment of a number of cancers including: breast, head and neck, leukemia, lymphoma, lung, osteosarcoma, bladder, and trophoblastic neoplasms.' *
And, on that day I'd get second degree burns from the sunshine despite wearing long sleeves, long pants, sunscreen, a hat and sitting in the shade. I had to have those burns packed. It felt ironic and cruel. And yet, I said nothing to her. Why?
Why was she allowed to negotiate and define what I was going through and yet I remained silent. Because it was polite? Because she had the right to tell me what I was going through was nothing compared to something else?
What is it about illness that allows others the right to tell you exactly how you aren't struggling or enduring something really serious and inherently crappy?
George Clooney & Suicide
I'm not normally a fan of relating one's life to that of a celebrity. They have access to doctors you and I will never be able to meet, the cash flow to set themselves up with whatever help they need, but when I read about George Clooney considering suicide as an option of living with chronic pain, I instantly related.
George says: “I was at a point where I thought, ‘I can’t exist like this. I can’t actually live.’ I was lying in a hospital bed with an IV in my arm, unable to move, having these headaches where it feels like you’re having a stroke, and for a short three-week period, I started to think, ‘I may have to do something drastic about this.’ You start to think in terms of, you don’t want to leave a mess, so go in the garage, go in the car, start the engine. It seems like the nicest way to do it, but I never thought I’d get there. See, I was in a place where I was trying to figure out how to survive.” *
In a period between 2008 and 2009, I too often went to that place. The pain wasn't managed, we had no idea what was ravaging my body and I had a small child that was being displaced constantly because of my pain. I became a really horrible person as the pain ate at me. I lived in this drugged state of mental blah with pain still stabbing through the haze. I wanted to end my life. It was only when I came clean with my doctor that we both decided I was going to push through and get on top of my life.
Miscarriage
I am an ardent supporter and advocate for women going through miscarriage or pregnancy loss. I feel it is one of the most marginalized experiences women can go through with the expectation they are never to mention it, to feel it or to allow it to affect her for the rest of her life.
Things people actually say to women going through Loss:
Get over it.
It wasn't a real baby.
It's not like losing a REAL baby.
I have a friend whose cousin lost a baby to SIDS, so your miscarriage doesn't count.
Why do we allow anyone, especially other women, to negotiate and discount our pain during this time of loss?
Losing a baby is real. No matter how many cells that baby had, no matter how you lost your baby, the pain you feel is real. It will alter you, to an extent, for the rest of your life. And that's ok. It's ok to feel that pain. It's ok to tell someone about that pain. It's ok to choose to move onwards after you feel that pain. That's called grieving and life with grief is hard but it gets better. I promise.
Infertility
Infertility may be a physical condition that affects the body's ability to reproduce, but it hurts. It digs in at every junction in your life. And, contrary to popular belief, once you have a baby, it doesn't automatically go away.
For me, my cause of infertility was PCOS and my amazing ability to miscarry. And the pain of ruptured cysts, the inflammation of my ovaries, hardly begins to rate against the pain of the fear that there would never be a child in my arms.
And yet, infertility is so dismissed that you dare not even mention the term in company.
A few years ago a wonderful infertility blogger named Emily (a happy update that Emily got her gorgeous baby!) explored the idea of Pain Points to be awarded. She felt that because she had *only* been trying for 3 years with no successful pregnancies her pain might not be as much or as important as someone who had lost twins from a premature birth, who held their babies and watched them die.
And we, as a community of infertility bloggers, an often fractured, jealousy riddled community, decided that there are NO pain points.
You feel pain. I feel pain. Each of our lives have been shaped by grief, by traumas, by shitty and amazing things that have happened. We feel pain to different extents and often extremes, but my pain is just as valid as yours. Your pain is just as valid as mine.
If I cannot understand your grief and your pain, that is MY problem. If YOU cannot understand my grief and my pain, that is YOUR problem.
It is impolite and incorrect to assume that because you have not experienced my grief and my trauma that you cannot understand the concept of universal pain, and that I do not 'have the right' to experience this pain.
It is wrong to negotiate someone else's pain. End. Of. Story.
Depression
I was diagnosed with depression formally in 2002. I was 21 and had planned on ending my life on my 21st birthday. I had a plan, a razor blade and no desire to wake up. If not for the complete endurance, sheer power of love, from my partner, I wouldn't be here, I wouldn't have an amazing life and you wouldn't be reading this.
I started Prozac titrating up every 10 days. It was horrid. It was worse than the depression itself. I started counseling. I started getting real.
And I've battled depression and anxiety ever single day since. Every day I CHOOSE to get up and fight this.
Early in my treatment, my counselor told me to disclose to the people around me that I was going through depression and taking meds.
And early in my treatment, people I loved and respected told me that counseling was a waste, an 'American' invention that held no merit. And that depression was a 'personal weakness' and that Prozac, instead of saving my life, would make me a zombie.
To be frank, it pushed me further backwards. I think disclosure about depression shouldn't be on a whim. You need to think about it fully because once you've told, you can never untell.
Depression is not a personal weakness.
Medication will not make you a zombie.
Counseling is not an American invention to rob you of your money and time.
Depression is real. The pain you are feeling is real. I know you might not feel anything or just get tidbits of pain through the numbness and emptiness, but it is real. And I get your pain, and even though we've never met, I accept you. I accept your pain. And tomorrow can be better.
Helping a Friend
There are only 2 occasions in which someone has a right to interfere in someone's feelings: 1) If this belief is causing immediate harm to the person (ie, coping with cutting or suicidal actions) and 2) If this belief is causing repetitive mental strain that is causing repeated self-destruction or depression.
Otherwise, you and I have no right to negotiate what someone else is feeling, be it a broken toe, a miscarriage or a life altering chronic disease.
Permissive Permission
But, it isn't just illness. We give people permission to negotiate our entire living existence, simply because we feel we shouldn't stand up and advocate for our RIGHT to be anything less than fucking perfect.
You may internally feel that my pain is not as great, as valid as yours. Unbeknown to you, I have experienced things you cannot imagine, just as you have experienced things I have NO ability to relate to -- however, you have NO right to tell me that what I experienced and what I feel as a result is wrong.
Emotions are fluid. What sadness feels to me might not feel to you. What pain feels like for me simply isn't the same for you. Be it physical pain. Emotional pain. Mental pain. Dropping a hammer on a big toe hurts, but HOW it hurts and to which extreme I feel it is on a universal spectrum.
The same can be said for how I feel about my first miscarriage or my twin loss. Or going to bed one night a real, full living human being and waking up the next on oxygen.
We talk about supporting 'others', acceptance for people who fit the 'OTHER' category in life. And yet there is anything but acceptance. There is a societal need to erase your divergence from mainstream normal and replace it with a jaded, fake, superficial 'ok'.
How many times do you answer a question with 'ok' or 'good' because it is what is expected but has NO real resemblance to your actual existence?
Why do you do it? Because you don't want to cause a minor amount of discomfort for the person you're speaking to. Because you want to appear better than you are, even if it means causing more pain in the long run. Because you've allowed others to negotiate your 'icky' emotions, feelings, reality for the socially accepted ok.
And right now, right this very second, you're reading this and feeling that twinge of yes, why do I do it? And right now, right this very second, I want you to realise you have the power to change. You can choose, from this second, to get real about the pain you're in.
Be it physical pain. Be it mental pain. If you are hurting, right this second, I want you to acknowledge it and CHOOSE to be the person who controls this journey.
