Losing Treatment and the Grieving Process

Losing Treatment and the Grieving Process

By Katelyn O’Leary

“Grief is like that – it’s inside you and it has to come out. There are no shortcuts. Be prepared for sudden explosions of feeling overtake you at inappropriate times.”

The quote above was taken from an article for The Guardian – but it rings so true for me and the grieving I’ve done for the past two years. Rage. Anger. Jealousy. Sobbing so hard I throw up. Screaming. Sadness. Anxiety so bad I can’t move or speak. My greatest fear has always been – What if I can’t get treatment anymore?

Katelyn O’Leary

That fear is now a reality.

For purely ridiculous reasons, my health insurance company refuses to pay for the treatment of my CRPS, claiming that it is an “experimental treatment.” This argument would be more valid if they hadn’t paid for ALL of my treatments last year. Now, we all know healthcare policies can change year to year. But it was within a matter of weeks. My doctors have filed an appeal and we haven’t heard back yet. Until this is sorted out, the hospital does not want me to come in unless I am willing to be liable for all of the costs associated.

If I can’t get treatment, I will not be able to walk without a crutch or cane. I will continue to get worse.

I received a message from one of my nurses, asking if the appeal decision had come through yet. I assured her I was waiting but trying to remain positive. I have amazing nurses at my treatment center (Keck Hospital of USC). In fact, I have received so much support from other CRPS patients and friends from around the world who suffer in ways that would horrify every day people.

I used to be an “every day person.” I took for granted how easy it was for me to take a shower. To go out for a 4 mile run and feel nothing but exhilaration. To happily join a crowd of people watching a live concert, intstead of standing in the back, terrified of being touched or spoken to about my illness. My delightfully rare pain disability.

I’m so angry. Too often than not, I have found that Bruce Banner and I have a lot in common when I am angry. I turn into someone I don’t recognize. All of the pent up jealousy, rage, and utter turmoil swirling within my chest is a hurricane – with no end in sight, but with utter destruction in it its path.

I have done and said things I’m not proud of. Things that I don’t even remember saying because I was in so much pain or so upset I blacked it out completely. And to be held accountable for these things, as if I am a fully functional and healthy person is absurd.

Which is why writing to my insurance company is so hard. How many studies can I print out showing that ketamine is an effect drug for the treatment of CRPS? I have twenty studies so far. How many doctors educated at Harvard medical school, the mayo clinic, and the top research hospitals in the country do I need to cite in order for them to realize that they are discriminating against me for being disabled and because my costs are so high?

Discrimination. It’s a tricky word. And it usually comes with even messier circumstances. As a white woman, I’m not treated the same in the ER as a black woman of the same age, who has the same problem as I do.  When Donald Trump released his immigration ban, I started to pay more attention to the immigrants in my life (To be honest I was not sure who was legal or illegal  - but they have changed my life nonetheless.) I rely fully on Access Para-transit for rides to treatment. Every driver I had was an immigrant or a U.S. citizen whom people immediately asked “Where are you from?” and not in a nice way. They would throw their scorn at these drivers with their tones and their upper-crust accents. Trying to make a point about how “illegals are taking our jobs.”

Most of my nurses at USC originally came from different countries. They are caring, compassionate, and extremely hard working. They are the kind of nurses every chronic pain patient wishes they had in their corner.

Too many times I’ve watched other patients get picked up by their husbands, children, siblings etc. And I couldn’t feel more jealous or sad. Going through this disease without a spouse or family nearby can be so hard. The solitude of a dark hospital room with beeping monitors and the smell of antiseptic filling your nostrils is unbearable.

But I would trade that feeling in a second if it meant I could receive treatment. It is absolutely necessary. Without it I don’t know what I will do.

It’s amazing what I have learned by having this disease. How many Americans can claim they speak to 4 immigrants / recent U.S. citizens a week and who are vital to their overall health? I may not have a husband, but my nurses, friends, and drivers who come from all over the world, have shown me that compassion has no limits (despite what the White House may think.)

With each passing day I don’t get treatment my leg gets worse. I hope tomorrow will be different. But for now I will focus on managing the pain, and managing my expectations.

Because I have learned too often, that despite the best intentions of those around you – you will be disappointed again and again. Maybe if I had a disease most doctors understood things would be different. But for now I will wait with my family and my friends with the news. I hope it is in my favor.

Katelyn O’Leary suffers from CRPS. She lives in Los Angeles, works in the entertainment industry. She is a frequent contributor to the National Pain Report.

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Authored by: Katie O’Leary

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Jean Price

A great article! And yes, grief happens! Losing treatment is a HUGE change and a big LOSS! The grief of this can also filter into many areas of our lives, besides just having increased pain and the accompanying decreases in our functioning! It can affect our relationships, our overall emotions, and our well being in general! All of this adding to the already enormous stresses of living with pain…and constantly working to have some semblance of a fulfilling life. We can feel once again suddenly abandoned and abused! Because we are, when this happens, especially for no good medical or…even slightly sensible…reason!! I’m so sorry this has touched your life, Katelyn! You deserve better! And I pray you will be able to again receive what has previously helped so much! It seems to me all the changes and losses we have with pain start to pile up early on, and we grieve from the first moment of diagnosis or right after the accident!! Even while we are still “expecting” in our heart of hearts for things to get better…for US to fully return to life as it was “before” pain. Hoping to somehow beat the odds of our disease or recover swiftly and fully from the accident…whatever it was that first spun us around 360 degrees, in often a matter of seconds! And left us hurting and sick….mad, sad, in daily pain, and often unable to care for ourselves!! It is actually a normal reaction to first anticipate getting better. It takes time for all of it to sink in! And we often have nothing prior to even compare it to! So we hope for the best, until we find out our personal best is much less than we expected or hoped for! And we begin to know we may face even further losses and changes, too! This means the first TASK of grief actually starts while we’re still in shock!! STILL trying to wrap our heads around how this could be happening…what it will mean, and all the emotions we are feeling! All while we are struggling to make some sense out of what is NOW becoming our NEW reality!! In a way, this shock protects us! The sheer difficulty of grasping the FULL impact of what we are experienceing, and of just trying to live with something unbelievable, is the first edge of grieving! And it IS a way of coping until we can bear to look at our “new normal”! Just like after a loss through death…when we hear people say “I can’t believe this happened!” Or “I can’t believe she is really gone!” For us, it’s difficult to believe we won’t get better…or at least good enough to STOP HURTING ALL THE TIME!! Then one day, the dam does burst!! And all those feelings AND the awful facts of life-long pain comes flooding over us! And this is a huge hurt, too! It flattens us for a time! We feel off balance and vulnerable! With all… Read more »


Thanks for this, and I’m so sorry you’re having trouble getting treatment. My stress level has soared this year, as the bean counters put in place more and harsher pain med regimes - I fear I’m about to be refused treatment, because I was referred to a “new free service” called “Healthy Together” that gives me my own “Personal Clinician” (yes, capitalized) in order to help me “set goals to feel better” and “feel comfortable with health care, and decrease stress and anxiety”…!! Also, the new program my clinic is offering, “PainWise” has as its motto (front page website) “working to end the opioid epidemic” - like I’d voluntarily join that program and have them report that I’m not doing enough to get off my meds?? (I’ve tried everything I can afford - it hasn’t worked. I don’t feel the need to prove that to them.)
My doc apparently has no say in whether I’m involved with these sorry excuses for real medical treatment, and I feel like it’s a catch-22: if I refuse, I get stamped as uncooperative, and if I go, I’m at the mercy of whatever QMHA they’ve hired at minimum wage to try and reverse the decisions I’ve come to with my doc (who’s a compassionate person, but overwhelmed and not very brave, sadly).
I’m trying to come to grips with my fear and with what my options might be if the worst happens. I just had an amazingly productive writing year, with 5 short stories, a full-length book of poems and (this month) a novel coming out - and that is because I have access to this tiny dosage of Norco that allows the pain to recede enough for me to focus. Without that, my writing career is over (I’ve tried to write while in pain,and there’s just no focus).
As you said, Katelyn, I have become more aware of others’ suffering and I know my situation is fortunate compared with very many. But I am angry for them as well as myself, and wish I had more energy and strength so that I could fight this cruel and yes, EVIL attack on the sickest among us. When I read what the Republicans want to do with healthcare now, I see that pain patients will be a drop in a very large ocean of suffering, and I really don’t know if America has the strength and bravery to fight back. I really hope so - for all our sakes.

Ive Nat Ben Assinoff

The right to be sufficiently or adequately treated as a patient for chronic pain sufferers has not been contested in the 23 years I have had to go to a pain management specialist after two failed back surgeries. I did not want failure when I had the surgeries. I have ran a business for 35 years and long before I had back trouble. After failed surgery I at least had the option to be treated with opioid medication. It had the stigma from folks that were not in constant pain that we use medication as a crutch. Not true. I for one use medication as means to stay alive and be an active part of society and as a model for my family, my sons to “not give up” when face with the problems in life. We all are GOING to have issues in life but they must be overcome. Opioid medication has helped me for 23 years to stay active. Activity is key to a healthful life. It does not matter HOW we remain active, as long as we remain somewhat active. The CDC has painted ALL chronic pain patients as the main contributors to the “opioid epidemic”. Those of us who have used the medication to be able to maybe just bathe, cook, and take care of ourselves has been a blessing, personally. I admit it p!$$*s me off that by far the majority of chronic pain patients feel a if we have been targeted without a reason. I for one will not give up hope and the fight against politics and a misguided attempt to try to make the irresponsible folks of society, at least with opioids, causing hardship for those who live responsibly. With the help of a damned medication I have been able to continue with a possible otherwise ill fated life. The “guideline” and its’ aftermath is determined to make chronic pain patients and the medication that helps, the responsible party to social irresponsibility with any and all opioid products prescribed or illicit. ALL who are prescribed opioid medication are not a party to the “opioid epidemic”. The authorities are building a “dam” to stop the flow of needed medication. It is not right to make all who are thirsty and need drink suffer the consequences of the opioid dam.

Jackie D Bennett

Thank you for your response. I Appreciate Your Message, and the Immeasurable Value in a Good Support System. I’m Grateful for Anyone Who’s Willing to Fight for Us, and With Us.
To Accept that Our Access to Medications and/or Health Care Hinges on our Insurance Company’s Willingness to Cover Tx (is Transparent), and Unethical.
It’s Unimaginable to think we’ll be Unable to Fill a Script because “it isn’t Covered by our insurance”…and someone please tell me- (Will we not even be given the Option to Pay Out of Pocket)…?
This is nothing more than another Detrimental Form of Dictatorship in an effort to Control Every Aspect of Our Lives.
- How Many Ways Can Our Rights to a Standard of Care or any sort of Quality of Life- be Compromised!?
It’s This Type of BullS##t Move that Makes it Easier to Thin Us Out with Minimal Effort. We won’t be able to make it to our appts much less Fight for Reasonable Care.
What Scares Me More than Anything, is that:
We (Are) Speaking Out! There (Are) Endless Support Groups!
There (Are) An Enormous Amount of Advocates, Support Letters, Organizations, and a Mass Amount of Fellow Chronic Pain Patients Who Have and Are Willing To Rally Around & Demand Reasonable Care that Doesn’t Descriminate or that Offers Nothing More than a Lack of Adequate Care that Leaves Us To Suffer & Die.
>So Why Aren’t Our Pleas being Considered?
>How Do They Continue to Move Forward with their Agenda to Strip Us Down & Leave Us to Fend for Ourselves without Access to Relief, or any sort of Humane Tx & Care!?
As someone who’s held hostage by Relentless, Debilitating Pain, I’ve had Plenty of Time to Research the Core of this Nightmare, and Anything Relative Surrounding it….
There isn’t a Lack of Victims, or Victims who Speak Up….it’s a Bright & Shiny Display of:
>The Power in a Position.
>The Rise and Fall of Humanity.
>A Panel of Disconnected, Politically Minded Decision Makers with the Authority to Make Calls that have the Power to Destroy Millions; Regardless of The Marginal Difference between the Number of ‘Us,’ and The Number of ‘Them.’
In Theory, there are a Handful of ‘Them,’ and a Staggering, Multi-Millions, of ‘Us’ …
(and They Win)?
I Don’t Get It(?)
*Why do we Pretend we Have a Voice, or that we Believe we’re a Democracy?
It’s More Apparent Everyday that we’re being Slow Walked into a Tragic “History in the Making.” Just as we Read Cringe Worthy Stories about Ancient Practices we Can’t Fathom Enduring Ourselves; We’re Writing, (or Living) the Script for Future Generations to Read (in Disbelief, and Awe).
Haven’t we Evolved Beyond the Potential for Population Control through some sort of Healthcare Genocide?
Only the Strong, (or Lucky) Survive, Aye?


The grieving process hit me hard when I tried for the second time to get any kind of help with physical therapy. The lady looked at me and said, “what is it you think I can do for you” and I lost it. Could not stop crying for 20 minutes and the woman must have thought I was a total loon. It hit me hard because I realized there was nothing anyone could do for me and they would just be taking my money. Doctors now just ship you to someone else or send you out for treatments no one can afford. It is a very sad state of things here in this country medically! I have all but given up hope of ever being in a state of semi comfort let alone pain free.

Sheryl Donnell

I can so relate to so much of what you say. While I have family to help me, my health care from my once outstanding pain clinic has dwindled so much over the last few years, I am constantly in increasing pain with no hope for any better care. And no other doctors who will take me on with my spinal cord stimulator and pain pump either. It is terrifying and moving is out of the question. It
Is a trap.

Katelyn O'Leary

Jackie D and anyone else - I mentioned immigration solely to highlight how wonderful the people I interact with are. They have become friends and a support system and I just wanted to showcase how being different isn’t a bad thing, since I am currently fighting a battle because I myself am different. Of course my medical struggles do not compare to the urgency and sometimes devastation that comes with immigration. I just wanted to show how grateful and wonderful these people are in my life. I want to acknowledge all those who have been so wonderful and understanding about my illness - and sometimes it can come from an unexpected place. I acknowledge I am privileged and I sometimes forget that there are other people who struggle so much more than me. My fight with my insurance company to be recognized as a person made me feel sensitive to the people I interact with on a daily basis. Truly just trying to showcase a positive viewpoint. That’s all. I’m just so grateful

gerard becker

recommended ketamine treatment to a dear friend with crps in westchester county ny
discovered it was nottttt covered by medicare and was administered only on an expensive cash only basis ( 400.00 a visit!!!!)! I guess there r insurance companies that will pay for it, but not in my part of the world???????????

Jackie D Bennett

Your Story Definitely Resonates with Me in the Fact that- as Chronic Pain Sufferers- We’re at the Mercy of Monumental Decisions being made, by People Who Determines thing’s Based on Theory, as Opposed to Actually Living with the Shackles that Hold Us Hostage…
Such as: Relentless Pain, Pain Relief, Options, Alternatives, Access, and The Oh So Ludicrous Idea that (We) Should Have a Say in What Works, or Doesn’t.
I become a Slimy, Seething Gremlin Each Time I Stumble Across another Article that Claims: “(Insert Preferred Tx, here),” ie: “Studies Show Opioids Not Effective in Treating Chronic Pain.”
As a 15+ yr Chronic Pain Veteran; I read these Pseudo Medical Reports & Wonder How Many of these So Called Professionals Conducting these Studies have had to Rely on Opioids for Any Amount of Mobility or Quality of Life? (My Guess), is Zero.
As far as your content referring to immigrants and how that pertains to our Medical Care, I’m struggling to comprehend the connection between the two? I Certainly Appreciate Healthcare Professionals who have helped to improve the Scope of Care, regardless of their Ethnicity… I just don’t know how the order to follow protocol in any scenario is relative, or inappropriate? Please help me understand.

Mark Ibsen


One of the saddest lessons of history is this: If we’ve been bamboozled long enough, we tend to reject any evidence of the bamboozle. We’re no longer interested in finding out the truth. The bamboozle has captured us. It’s simply too painful to acknowledge, even to ourselves, that we’ve been taken. Once you give a charlatan power over you, you almost never get it back. -Carl Sagan, astronomer and writer (1934-1996)

Your doctors
Your legislators
Your insurance person ( looking at a check list)
ALL bamboozled,
And the bamboozle has persistence.

I’m sorry.
As a physician who is getting better and better at seeing this
My career
My freedom
My life are at risk.

Yours too.
How can you have more power?
How can you take matters into your own hands?
So I pray.

Zyp Czyk

I admire your bravery and compassion. To thread the story of your dependence on immigrants into the story of your own suffering is notable.

But I also understand this implulse because I’ve noticed how much more sensitive I have become to the hardships of the people all around me since I’ve been disabled by my pain. When you’ve been kicked in the teeth by life, you know what it feels like to have your lifestyle destroyed by fate, and you begin to realize that your suffering is only a small part of all the other suffering in the world.

Of course, that doesn’t relieve our own suffering, but it reduces the sting of being “unfairly” singled out for such a dismal fate to realize how many others are in the same boat.

I’m still keeping my fingers crossed that you get good news soon because we all deserve a break and a little light at the end of the tunnel.


Your story touched my heart. I have not had the chance to experiment with treatments. I have been out of work two and a half years after cervical and lumbar fusions, as well as a knee replacement. I also forget what a day without pain is like. As a medicaid patient I qualify for minimal treatment. I also have no family close and have also felt the pain of not having visitors, or waiting for ride service to pick me up.
I also am greatly struggling with not being 1/4 the person I used to be. I try to be happy for what I can do, and not dwell on what I cannot.
I hope the insurance comes through for you. Prayers and positive thoughts for you

A type of therapy that has worked on a pt previously and produce a positive outcome does not all of a sudden become “experimental”. I suspect that with all the sizeable price increases on various medications that the cost of the Ketamine therapy cross a $$$ line. If you are on Medicare/Medicaid/Medicare Advantage file a GRIEVANCE with https://www.cms.gov (800-MEDICARE). Also request what their appeal process is.. they don’t have to tell you about it unless you ask and then they are obligated to provide you the process in writing. Those three programs… the last appeal is ALJ( Administrative Law Judge ) where > 50% of pts will get an approval.

Donna Wright

CRPS is a cruel disease. My left foot feels as if it was filled with lighter fluid and set on fire. It turns bright red swells and I am unable to wear a sock or shoe. When it’s had enough of that my veins feel as if they are filled with ice cold gel and then my foot is stuck in a bucket of ice water that cannot be removed. It turns so purple and cold that even the nurse is shocked when she touches it. Can I manage my pain? No my pain manages me. We do what we can just to survive each day and each day CRPS claims more of our bodies. Yes it spreads the burning will continue up the nearest nerve with NO cure. Insurances and policies are bearing down on the very very sick of our nation. In the meanwhile those who had rioted our nation and stolen our pharmacies are using those drugs on the black Market changing the policies but not the patient care.Those patients who follow all the rules and kept all of the policies those patients are being turned away from insurance companies and even Physicians. All we ask as a patience is to allow our medication to stay the same to be treated with dignity, respect and most of all Do no harm. When patients do not receive their medications the harm is unbearable, the suffering can be controlled and limited. Who will feel our pain? Who will hear our voices in the darkness where the harm leaves us with no hope? CRPS is a cruel disease which was called the disease of death during the Civil War. Without proper Medical Care those with CRPS might see this become the disease of death in this generation.


Funny, but I’ve never heard anyone from the White House say anything about the compassion of immigrants. That one stupid throwaway line has overshadowed the terrible times the author is dealing with.