Sometimes I’m Just Expelling Something

Sometimes I’m Just Expelling Something

(Katie O’Leary has CRPS and is a frequent contributor to the National Pain Report. She posted this on FACEBOOK the other night—and we felt it should be shared. Happily, she agreed)

I’ve come to realize that (mostly) men aren’t just trying to control or fix my illness because they want to help – they just can’t handle being around someone who has an illness. And when reality sets in, they lash out. And blame me.

Katie O’Leary

Many people have done this.

“If you didn’t do this- “

“You realize this isn’t long term right?”

“But why can’t you just live with it?”

That’s my favorite one. When the fear consumes them and they feel guilty for wanting to bail on a friendship or something more, so instead they demand why I can’t change. Why I can’t pretend my leg works in public. Why I can’t just “not” need things?

And usually these people know the bare minimum about treatment and what this disease is. But they want to cut and run so hard because they think a life-long illness is a result of a “bad attitude.” When, treatment is in its infancy, and I challenge anyone to set themselves on fire and not demand water to put it out.

“But the fire will come back!” They say.

“Water is the only thing I can use to put it out. Besides sand and maybe a blanket.” I say.

And when the fire is raging, and they see the invisible illness take hold on my face or in my absences or in my body language – they feel so human and so afraid. Mortality and pain are things people don’t want to deal with. So we find ways to ignore it, avoid it, pretend it’s not there.

I refuse to be around weak men and weak women who use their own fears and their own problems as a lens for their treatment of me and others with this illness.

Because telling me your fears of addiction, while I’m so close to being hospitalized – doesn’t help me. Crying or getting emotional about what scares YOU doesn’t help me or our friendship or relationship.

I used to care so much about keeping other people happy and in my life.

You must start wondering and asking yourself – are they doing that for you? And if they aren’t, if you are just a convenience or someone to use or rage at – end it. Or just don’t care.

I might have this for life, but I want ME for life and not the opinions and judgments of those who only care because of their own agendas.

Life has many gifts. Self-actualization is one of them. Empathy is another. Love is the most important. And when you love someone, you stand by their side and accept the storm is raging but you know it will calm down. Maybe it will still rain – but it’s not forever.

But the right person and people can be.

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Authored by: Katie O’Leary

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CHRISTINE GRAY

Thank you for sharing. I too, have CRPS in my right foot and it freaking sucks. When your favorite foot is always angry, burning with fire, intimacy is challenging.

MollyCatColo

Erin Sullivan,
The HHS Pain Management Best Practices Inter-Agency Task Force Draft Report. is located at https://www.hhs.gov/ash/advisory-committees/pain/reports/2018-12-draft-report-on-updates-gaps-inconsistencies-recommendations/index.html

There are two ways to submit comments on the Draft Report. **Deadline=April 1st**
1. Submit through the Federal eRulemaking Portal at http://www.regulations.gov, Docket Number: HHS-OS-2018-0027 (Primary method)
2. Email to: paintaskforce@hhs.gov (Secondary method)

Joseph Lane

The ignorance of chronic pain is not just a male problem. I have found that ignorance is a big reason for the inappropriate reactions I have received, along with the folks that view my illness as an inconvenience. I try to educate or ignore.
I had a 20 year relationship end because she could not deal with what was coming because of my illness and I have met a few other men in our community that had the same thing happen to them. Ignorance and self-centeredness is an equal opportunity employer.

Holly

Amen!

Katie Olmstead

I hear you. I have had CRPS for almost 21 years now. And I am divorced. For many reasons but this is sure part of it, or the last straw. I feel more empowered living on my own (with cats).

Endofmyrope

I completely understand where your coming from. I know marriages that have come to an end because of CRPS. Your right no one wants to be stuck with someone who will NEVER get better or worse yet will have to depend on a partner for most things. Never being able to do more than one thing a weekend and then being in bed for two days to recoup. No one will ever understand with a chronic pain patient.

I also have CRPS, I don’t even think my pain management Dr listens any longer because of the federal guidelines……cause you know we are all junkies!

Thank you for letting me voice my opinion

Ellen

I get it if your night or possibly ( cancer diagnosis which many live through go on to work again do as we’re yes some do not prior to disability I devoted my career to cancer nursing specifically bone marrow/stem cell close 25 years and deeply respect anyone with diagnosis ) I wish often I got a terminal illness and died with my husband loving me He became despite cancer nurse for years then changed but instead 7 years and at my sickest he without a warning walked out on me he to me he can deal with strangers his mom others sick and hurting but I needed him and now he is rude mean a jerk and we were together 26 years 24 married with bow renewal and party set for 25 th never happened
So I get what you are saying most my former couple friends colleagues school moms have forgotten me except one here and one moved Texas and old friend resurfaced but lives far away
I have money loneliness he retired so new insurance three most helpful meds if approved are ridiculously expensive
I have to watch I don’t blame myself
I have like many of you a rare disease that causes terrible pain one meds terrible headaches and vomiting
I don’t get it after all those years I still cry everyday over my husband ( separtated for some reasons vs divorced) but emotionally he is gone and I don’t get it
Take care to you

kelly

Sad but true. My circle of people has pretty much dwindled to zero because I decided to stop catering to the people who blame me for my conditions, refuse to believe the pain is real, refuse to believe I’m not just a recreational drug addict, etc. One or two of the most vicious suddenly saw the light when THEY got unending pain & expected me to fall all over them with sympathy & empathy & care…I don’t THINK so.

i’m much happier with my animals & my online CPP friends & support groups.

Barbara Snow

I can’t stand it when my own family members and there are very few left. Tell me I do not need pain medication. That it’s mostly in my head. Yet every time I get a new scan it’s worse. Or maybe we should try one of those blow up back braces. Maybe that will help? And I’ve been wondering why my neck has been hurting so bad lately. Well new scans gave me those answers. And I live in a town with on ENT’s in it. I have a tumor in the back of my neck pressing on my carotid artery? Plus I’m a caretaker 24/7 thousands of miles away from my family and good doctors?? Not enough pain control?? That’s all I got.

Maggie King

Thank you! Just had a short conversation with my husband of 25 yrs. We struggled thru terminal cancer, neck herniation, RA and bipolar (him) and near death birth of only child, fibro, DDD, OA, CP, MDD (me), so you’d think we’d be on the same page on the horrific effects of opioid hysteria on CP patients.
Quite the opposite, but I’ll be back after work.
Glad I’m not alone

Tbiels

You are correct . I’ve been on opioid treatment for 17 years and never once felt like sticking a needle in my arm. It’s all a lie. Far more people for of tobacco use every day and year than opoids but because it’s politically popular to loop heroin addicts in with chronic pain patients we don’t see any reduction in cigarettes or even concern , government just continues to tax it and build stadiums . This is a travesty and we need The Chronic Patients Protection Act to protect ourselves

Bruce Stewart

Hang in there, babycakes- the reality that I would never have a significant other sunk in after my last two girlfriends left me and didn’t even bother saying goodbye. Although one of them said “it’s all about you – you, you, you!” when I tried to explain that I was merely trying to survive, it didn’t matter. They want it to be about THEM. And I am not capable of physically doing that. So I’m alone. With a cat who loves me. He understands. Hugs

Debbie Gibson

Amen, you are so right. Love should never be conditional.

Bruised But Not Broken

Katie you just described my life to a T. My feelings, my experiences, my relationships. Due to my pain they’ve left. After that, the very few that lingered were indeed using me. I finally found a way to make them leave. It’s a tragedy because I like yourself think that love is the most important thing on the face of this earth. I love people. I’m an empath as a matter of fact. It took years for me to learn what was wrong with me and come to find out, nothing was wrong with me. My heart was just too big and my pain as well for others to deal with. I still have faith that there’s someone out there that will one day treat me like I have a heart not to mention a mind to go with it. God bless you Katie. You’re a beautiful girl with a lifetime ahead of you. You’re very brilliant as well. Take care, say your prayers and have faith. This will take you farther than you could ever imagine. Yes I know, easier said than done…

Erin Sullivan

Can someone please tell me how and where to send my story. I tried using the email editor @nationalpainreport.com. That email address sent me a mail demon with an error. Im trying to get it in before April 1st, the deadline. I really appreciate your time and effort on my behalf.

In relation to Katie’s blog, I agree. I’m very lucky to have a very compassionate doctor at Kaiser in California. He has helped me so much and he really genuinely cares. Trust me that I have had that type of doctor, cold and indifferent, thinking I was actually crazy to have that much pain!! All he cared about was his steroid injection mill. Get ’em in and get ’em OUT. Thats how he paid for his Ferrari. So cold and indifferent. Truely the worst kind of Doctor, ever.Unfortunately, At Kaiser, it’s the corporate heads who have imposed these “new policies” in response to the (alleged)opioid crisis. Most of us know that the statisics used by DEA, CDC and the like, are conflated and skewed due to combining drug addicts, illicit drug users, heroin, and stolen prescriptions from legit pain patients. I have been in chronic pain since I was 12. 50 years. I have been on opioids for the past 20 of those years. It’s just been in the last ten years that I am actually “stable”. (as much as I can be). But Im scared to death of what’s coming. I am being force tapered, off of my meds, because supposedly Im taking “way too much and it’s “dangerous!”. Kaiser threw my doctor under the bus. and me along with him. They are demanding I attend a chronic pain program that I already attended a few years ago. It didn’t help, in fact they put me on a terrible drug called Topomax. OMgoodness. I was babbling and drooling (say my adult children) and then as I increased the dosage? My dominant right arm went completely limp and that lasted two months! Not to mention it did absolutely nothing for my pain. I lost my job, and then I lost my home. I need my medicine and am really scared of whats coming

Gretchen Schafer

WOW. Perfect.

Maryann Holland

I know my husband helped me so much around the house things are used to be able to do and can’t do anymore . He is always telling me to go lay down because it must be hurting actually it’s hurting that he’s telling me to do that because I want to be with him . I know I he loves me but he hates how my medicine have been taken away for me and now my life is mostly in my bed I can only get up and do a few things and then I have to lay down . I love that he has patience with me even though sometimes he gets angry when I can’t remember the words I want to say . But the worst thing is my family they don’t come over they called every once in a while and even though they might have the same disease they ignore it . this disease has ruined my life I have no quality-of-life I have no friends you only thing is people who have chronic pain and fibromyalia and other diseases that make our lives and in this bout with the pain . Remember the old saying try walking a mile in my shoes but I wish that on no one

Thomas Wayne Kidd

Thank you for sharing your story. I have been to this chronic pain thing for more than 30 years. May wife suffers from it to. As have been married this April 13th 46 years. True love binds people together. You are so right about most males to-day as well as many females be I without true love and commitment. Sex and self gratification is what most are about. Thanks again for your comments. God bless.

❤️

James McCay

Thank you for speaking so eloquently for us all!