Stigma, Shame, and Pain

I have a broken body.

(By the way, this damn post has taken me four days to write.) I am a chronic pain patient. I see a pain management specialist, among many other specialists. There is a lot of stigma and shame associated with being in pain and I really don’t understand why. I didn’t do this to myself and I am not a drug addict, yet I get treated like it’s my fault that I’m in pain by many medical professionals. I have been questioned with disbelief and derision. I have been dismissed and not taken seriously. I think it’s time to talk honestly about chronic pain and treating it without shame. We have gotten to a point in society where we can talk about intellectual disabilities and addiction, yet pain and mental illness are still veiled and whispered about and shamed.

I have a long list of diagnoses, medications, specialists, surgeries, illnesses, and diseases. I am 46 years old. I did not discover most of my genetic issues until 2007… and by then I already had three children, each with their own set of issues. It was because of Anna’s hypotonia, lordosis, and kyphoscoliosis, that led her pediatric geneticist to question our family history and recommend that I see a geneticist too. Even as a child myself, I knew something was different about me. I got tired so much more quickly than my friends. I had my first major surgery at age 15, another at age 25. On vacation in Mexico, in my mid-20s, I had to sit often to catch my breath when touring the ruins of Tulum. I was always worn out. Over the years, I’ve had doctors say it was everything from chronic fatigue syndrome to Lyme Disease to fibromyalgia to “it’s all in your head.”

Since 2008, I have been seeing a pain management specialist. It took 2.5 years to find the right medicine to help me. Two and a half YEARS. Monthly trips to see the doctor. Many, many more trips to see therapists… physical, occupational, and psychological. In addition to my regular family and pain management doctors, I also see a cardiologist, a rheumatologist, an orthopedist, an OB-GYN, a urologist, an ENT, and of course an optometrist and dentist. Anna and Dominic each have their own set of specialists, most still in Austin. I don’t talk about my own health issues often because I’m a private person, I’m embarrassed, but mostly because of the stigma associated with begin a chronic pain patient. I don’t want to be judged or pitied but I do want to be understood.

I know what’s wrong now. I have Ehler-Danlos Syndrome (which is a connective tissue disease) and Auto-Immune Disorder, Not Otherwise Specified. Some doctors are familiar with EDS because of the vascular type which can cause sudden dissection of the aorta (that’s what killed John Ritter); I do not have that type. Because of EDS, I had a left inguinal hernia at age 15 that needed to be surgically repaired. Because of EDS, I have a mitral valve prolapse that was diagnosed during my first pregnancy. I also have two irregular heart rhythms, PVCs and PACs. Because of EDS, I grow fibroid tumors. I had one surgically removed from my uterus in my 20s that was softball-sized. Because of EDS, my symphysis pubis joint separated during my pregnancy with Dominic and one hip rotated several millimeters higher than the other. It was incredibly painful to walk and carry my 3-year old Anna. During that time I was taking Anna to PT, OT, and ST several times a week and had to get a disability placard for my car. Because of EDS, I have early onset arthritis and my joints are elderly because the connective tissue doesn’t work to keep them in place. On my left knee, I was playing with the kids and felt a pop… that led to my first knee surgery. I’ve had a meniscusectomy and micro fracture of the patella. On my right knee, I’ve had a patello-femoral knee replacement and lateral release. But my auto-immune system didn’t like that new knee joint and kept attacking it. Every month, I would get 30-50cc of fluid drained out of that knee. 18 months later, I had another knee surgery… a synovectomy where the synovial lining was taken out of the knee capsule so that serous fluid could not be created any more. It worked, my knee doesn’t swell anymore. My ortho, the incredible Brent Brotzman, said my knees looked they were 60 years old. But because I’m so young, I will need more knee surgeries. Because of EDS, I have super dense fibrous breast tissue and had to have a biopsy on calcifications that showed up on my first screening mammogram when I was 40. Because of EDS, my thyroid gland got angry with my last pregnancy and was swollen. Then it stopped working and I had to take thyroid replacement hormone, diagnosis: hypothyroidism.

Why am I sharing all of this now? Because just over a week ago, I had a total thyroidectomy. It was my 8th major surgery. I had two nodules, one in each lobe. One side was a benign follicular nodule, the other was a follicular neoplasm with Hurthle cell changes with calcifications… which could or could not be cancer. It’s like finding pre-cancerous cells in an abnormal PAP smear… changes are occurring and action should be taken. I will find out next week what my final pathology results are, if I have Hurthle Cell Carcinoma or not. The ENT said upon gross examination, the tumor appeared benign. So most likely, we caught it early and it’s all gone. I will need to take thyroid hormone every day the rest of my life… but I already had hypothyroidism and was taking it prior to surgery anyway.

The transition from my regular pain medicine to get ready for surgery was brutal. The medicine I have been taking for 5 years cannot be used during surgery, it renders narcotics useless. My pain management doctor had a plan to step down my regular meds, go 48 hours with nothing, then start on narcotic meds. Unfortunately, my body has become allergic or immune to most opioid-based medicine. For the first week of this transition, I felt like I was dying. I am not exaggerating. I lost 13 pounds in 1o days. I could not eat, I could not sleep. My brain would not shut off. My arms and legs twitched uncontrollably. I was experiencing withdrawal, every 2.5-3 hours for an hour and a half at a time, around the clock, for over 5 solid days. It was brutal. I begged my husband and my mother to take me to the ER because I couldn’t take it anymore. I really did think I might not make it. I cried. I told them to take me off of everything and just let me go through surgery with no pain medicine. I didn’t know what was wrong and why I was so sick. It took a hugely massive amount of stronger medicine to stabilize me. Scary stuff. Thank God I have a doctor who is well versed and cares.

The day before my thyroidectomy, I was stable enough to get out of bed and eat. So we decided to go ahead with the surgery. Post-op pain management was going to be tricky because a typical morphine drip via IV would be completely ineffective on me. Thank God for my mom. She was my angel, my advocate, and my voice throughout this entire ordeal… 6-7 calls a day to my doctors, emails, patient portal updates, and a full written post-op plan explaining my history and meds. I would not have received adequate care had it not been for her. Thank God for my husband who worried endlessly, took care of the kids, and took care of me. He ran errands, he cooked dinner. I am so very fortunate to have such an incredible support system.

So here I am about 10 days post-op. Mostly, I still feel like crap. I’m tired, my pain level stays at a steady 4, shoots up to a 6 when meds wear off… not horrible but it wears you down hour after hour. I forced myself to take a walk on Thursday; yesterday I made myself get back on the elliptical for 30 minutes, went out to eat with my family, then entertained neighbors last night. That was too much. I’m not out of bed at all today and I’m swollen.

This is what a thyroidectomy looks like from my first selfie (more to see what the heck my scar looked like) to this morning over the course of the last 10 days…

New Braunfels documentary surgery thryoidectomy photographer

I’m hoping to feel a bit better soon because I have another surgery scheduled in three weeks… September 30th… a total hysterectomy (taking the uterus, Fallopian tubes, and cervix but leaving the ovaries) and a full pelvic floor reconstruction. Ouch. This surgery will be much more involved, much more painful, and the recovery will be much harder. My pain management doctor wants it done as soon as possible because my pain receptors have already transitioned meds and he doesn’t want me to go through that awful process again in the near future. I have multiple fibroid tumors and myomas on my uterus. The size of them have displaced my bladder and bowel. They have caused a lot of tummy issues, pretty severe. The thyroid was more serious though because of the threat of cancer. My OB-GYN did a biopsy of my uterine lining and there is no sign of cancer in there but the darn thing still needs to come out. So… September 30th is the day. The plan is for my OB-GYN to use the DaVinci robot to do the hysterectomy, then my urologist will take over for the pelvic floor reconstruction. It will be a long surgery. My connective tissue and ligaments have all fallen out of place and will need to be reattached. My knees will need to be in stirrups and that right one which has been replaced does not have the mobility to bend very well. So my pain management doctor wants them to place an epidural prior to surgery to completely numb me from the waist down and leave that epidural in place for several days after surgery. That will allow the worst of the trauma to heal so I won’t be in excruciating pain.

Recovery will be 6-8 weeks. We have family members and friends rotating help through the month of October, but I will not be able to mother my children, take care of my mom, or be a wife to my husband. I hate being a patient. I hate being dependent. I hate being vulnerable. I hate asking for help. But it’s temporary, I will survive it and get through it. Some days, I am so very, very tired that I think if I didn’t have the kids, I would be done. It’s all about perspective though. As I was going through the worst of the med transition, I found out that my high school boyfriend went in for an emergency appendectomy only to discover that he has Stage IV colon cancer that metastasized to his liver and lungs. He has very young children and a gorgeous wife and a huge amount of deep and long-lasting friendships. They operated and got all of the tumor in the colon, and he starts chemo in a month. Crap. Perspective right? Please add him to your prayers, his name is Marco.

You would think in today’s modern society of acceptance and understanding, there wouldn’t be stigma and shame associated with being a chronic pain patient. I always feel the need to explain, to justify, to educate… I eat healthy, I have been a vegetarian for three years now. I’m not 100% vegan, but I don’t eat eggs, I don’t drink milk, and I limit my cheese and yogurt intake to a small amount. I do admit that I am a sugar addict, but I work on that every day, day to day. I exercise regularly, religiously, 1 hour a day on the elliptical… average 5 days a week. Most days I log over 12K steps on my Fitbit. I don’t drink (very very rarely) and I don’t smoke. I prefer to focus on the positive, count my blessings, and try to take care of others. Most people don’t know or understand what my life is like. I share bits and pieces but I HATE the poor-me, pity-me, woe-is-me attitude. If you aren’t happy, do something to change your circumstance. My children are hard… and out of respect for their privacy, I don’t share as much as I’d really like so I’ve been struggling with the parenting part of my blog for a while now.

While getting ready for this surgery, we had the start of a new school year. 6th grade for Dominic, 8th grade for Anna. Everyone posted first day of school photos in the last couple of weeks, myself included. I’m so glad no one asked how it went because first days back aren’t typically easy for my kids. Dominic did really well. So far, no calls from the principal and only one after school detention. However, I have gotten over 9 alerts on his TxConnect account for missing and incomplete work already. His 504 meeting is Monday, and we will get to meet all of his teachers. Anna however has had a horrible start to the school year. Her ARD meeting is the 22nd. Every other day is awful. Hitting, kicking, throwing things, sitting down in the middle of the hallway and refusing to move, screaming, crying, cussing, having to clear the room for the other kids’ safety. Friday, she hit the bus driver while in motion and endangered everyone… that event got us 3 phone calls and a threat to restrain her or kick her off the bus. Yeah. We’ve taken away all of her privileges. We’ve yelled at her. We’ve put her in her room. We’ve given her HUGE incentives. We’ve showered her with love. We’ve gotten her behavioral therapy, psychiatric therapy, she’s on half a dozen medications. It’s the worst feeling to think that you are an awful parent. That no matter what you do, it’s not enough. That other people judge your child and think you must be terrible people. I don’t know what to do for her. I don’t know why she acts that way. I’m sorry. I’m sorry for her, for her teachers, for all of us.

In the end, all I can do is love them. Continue to forge ahead, day by day, and do the best we can with all of the medical and educational professionals we have on our side. I thank God for friends, neighbors, family, and especially for my husband, mother, and children. Though things feel overwhelming for me at the moment, I know it will stabilize. We will have joy, we will celebrate, we will be together, we will help others. Thank you for allowing me to talk about my pain without stigma or shame.

As Anna says, “Life is Love.” Most likely, if you are reading this, then please know that I love you.


And I hope to pick up my camera again soon!

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