Chronic Hope:
For People With Chronic Pain, By People With Chronic Pain
Chronic Hope Counseling was created to focus solely on the chronic pain and illness community and to create a safe haven for this group of people who are often forgotten. Mental health practices tend to list “chronic pain” as a 10th or 11th specialty in their list of around 15 things they focus on, but I believe that chronic pain/illness counseling is so unique and requires so much training it needs its own specialized practices and counselors. That’s why in 2019 I opened Chronic Hope Counseling.
Jennifer Sutton’s Story
Every time I sit down to write my chronic pain story I find myself struggling to write it, how to organize it, what to put in, what to leave out, what’s important. It's so hard to condense over 30 years of pain and illness into something short enough to fit on a website! But here I am sitting down and giving it a try, I hope it make sense and I hope (and also don’t hope) that my story connects with you in some way.
The Early Years
Pain is an interesting thing. Looking back at my childhood I’ve always had pain, but at the time I thought I was living a perfectly normal life. When my legs hurt my mom would show me how to get a pillowcase and wrap it around my legs to calm the shooting pain. When my jaw dislocated when I was 13 we just scheduled the surgery to fix it and weren't too concerned because my sister’s jaw had done the same thing when she was my age, so she walked me through it. All my pain was like this, completely normalized because my mom and/or sister struggled with it too so we didn't think too much about it. It wasn’t until much later in life that I realized that just because something was MY normal that didn't make it normal!
P.S Please enjoy the awkward ‘90s picture of me and my older sister Karyn!
The Teen Years
When I was a teenager I was a competitive tennis player and a high ranking on my school team. Up until my junior year I managed to play with minimal pain and I didn’t feel that chronic pain was as part of my day-to-day life, (it definitely was, but I was still struggling to understand that). But when my senior year came along suddenly I was having a hard time moving around the court. I found myself wearing knee and elbow braces and I remember thinking that I was just falling apart.
At the same time this was happening to me, my older sister, who was playing college tennis, was having to quit tennis because her pain was progressing as well, so again my pain was being very normalized and again I thought all of this was just what the human body did. I remember being 17 years old and thinking this is just what the body did as it got older.
The picture to the left is me and my little sister, Samantha during my senior year of high school at a tennis match. This was one of the matches where I found myself needing to wearing knee and elbow braces because of increased pain. Isn’t she just the cutest little thing you’ve ever seen!
The College Years: Okay Maybe This Isn't Normal (the first diagnosis)
The fatigue hit suddenly and it hit hard. I was sleeping at least 12 hours a day, taking at least 18 hours of classes at UNC Charlotte, working part time and losing my sanity full time. My pain was increasing, and quickly. As the college years passed my health was slipping through my fingers quicker and quicker. Getting up in the morning was hard, walking around campus was hard, everything was difficult and everything hurt.
My sister is four years older than me and had graduated college, her health had deteriorated and she had finally had a diagnosis: Lyme Disease. Because of my struggles with pain I was tested too, got a positive western blot test and started treatment in 2014.
In 2014 Lyme treatment was much cruder than it is now; they don’t tend to treat with supplements and support the immune system like newer science suggests. When I was being treated my doctor wanted to “nuke” the Lyme and it was devastating to my body. I was on about 4-5 different harsh antibiotics for about a year and it was one of the hardest and sickest years of my life. This year was full of herxing, throwing up, fevers and pain. I remember feeling like I was dying. After about a year I stopped Lyme treatment and it took years for my body to recover.. But I thought the worst was behind me, I finally had a diagnosis and had been treated.
.
I do think I had Lyme Disease, (I grew up in the woods and got bit by ticks all the time. Once even stepping in a tick nest. Who knew that was a thing?!) because a few of my symptoms cleared up after treatment, but unfortunately I found my fatigue and pain kept progressing. My pain started getting so intrusive to my day to day life that I had to put off going to graduate school and I found myself spending most of my time in bed. I tried to keep a job for a while but it was too devastating to my health, and absolutely not something that was maintainable for me.
I was incredibly fortunate to have a husband with a wonderful job I could afford to quit my job and focus on my health. It was around this time the endless doctor appointment started. At least one new doctor appointment every week and no one could give me any idea why I was hurting. But in 2015 I was desperate to find out what was going on with me that I continued to see every doctor that I possibly could. At this point I was still thinking the doctors would find something that could be fixed, and I just had to find the doctor who was going to make that diagnosis. I was hurting so badly, and all my tests and imaging were coming back normal, I was angry; I was confused, and I had no idea how to be chronically ill. I was being invalidated by doctors, passed from doctor to doctor and beginning to question myself as well.
The next few years I did everything from physical therapy, to dry needling, to steroid epidural injections, to EMGS, to nerve blocks, nerve ablations, trigger point injections, X-Rays, MRIs. made appointments with absolutely every doctor who would see me, but nothing worked, in fact I was just getting worse and worse. All I had to show for these years was a list of things that weren’t causing my pain and a list of procedures/injections that didn’t work.
I started to invalidate myself pretty harshly and consistently. Why would my shoulder hurt one week, then my knee hurt the next, why could the doctors find nothing wrong? I literally felt like I was dying while every doctor told me there was nothing wrong with me. Maybe I was just losing my mind.
After College
The Inspiration Behind Chronic Hope Counseling
It was around this time that I decided to seek out counseling. I felt that I really needed to talk to someone who understood chronic pain, pain was a part of every thought that passed my head and I needed my counselor to know that. I googled, searched around psychology today and called several counseling centers only to find out that chronic pain specialized counselors didn’t really exist and actually. I had a few practices tell me the closest thing they had to a chronic pain counselor was an addiction counselor, even though I was on no medication at the time and had no history of addiction. I am still so angry and overwhelmed by the mental health community’s response to chronic pain counseling. I remember having a consultation with a counselor during this time who told me that I should just have hope that one day I would wake up feeling better. I was working so hard on accepting my pain and finding ways to cope with it, I couldn’t hope every morning I would take up miraculously healed. This counselor refused to book an intake session with me because I refused to have this unrealistic, blind hope.
I strongly believe that chronic pain/illness counseling is a specialized skill that requires training and experience and isn't something that a mental health professional should put on their list of “specialties” lightly. I really do think a lot of well meaning mental health professionals are doing more harm than good with the chronic pain/illness community.
I was so enraged that I couldn't find a counselor who specializes in chronic pain counseling that I decided to go to enroll in graduate school and get my M.ed in counseling and open a practice that focused 100% on working with the chronic pain and illness community. I had a B.S in psychology, a minor in cognitive science (and a useless B.A in criminal justice) so it seemed like a natural progression to my education. Excited that I got accepted into NC State’s counseling program and knowing that my health was my full-time job, I enrolled into their part-time program and got ready to start my journey.
As my classes started I quickly learned why there were no chronic pain/illness focused counselors out in the world: none of my classes mentioned ANYTHING about people with chronic pain/illness unless I brought them up. So I brought them up as much as possible, wrote every paper on a chronic pain/illness topic and did every project and every internship opportunity I geared it towards a chronic pain/illness focus. In fact a group I still offer from time to time at Chronic Hope I created in my Group Counseling class in grad school!
Graduate school was extremely difficult. As someone with a mysterious, and seemly progressive chronic illness, every day was a scary challenge. When internship started I got hired at Barton College which was an hour commute from my house. I love that I interned there; it was a great experience. But there were several evenings I would make it home, make it through my front door, and with my shoes and coat still on, fall to the floor and fall asleep. Thank goodness for my sweet dog Scooby who would curl up with me and join me for my nap.
I graduated from NC State in 2019. Within 3 months of graduation I had opened Chronic Hope Counseling and 1 month later I was seeing my first client in my little room I rented in a shared office with two other counselors.
The rest is history!
I want Chronic Hope Counseling to be a safe haven for people with chronic pain/illness a place of true understanding
It wasn’t until 2020 that I finally figured out what had been wrong with my body, after over a decade of actively searching for a diagnosis. I found the diagnosis where I least expected it. I was trying ANOTHER new neurologist in an attempt to figure out my headaches, I walked in, sat down in his office, he looks at me and says “You have Ehlers Danlos Syndrome don’t you?”. That was the first time I heard that syndrome in a very long time. He could tell by the way I walked and held my body that I was hypermobile. He did a quick beighton score test, told me I was hypermobile and recommended I follow up with a geneticists. This led a whirlwind year and a diagnosis of hypermobile Ehlers Danlos Syndrome (hEDS) through Fullerton Genetics, migraines, sleep apnea, hip bursitis, costochondritis, orthostatic intolerance, cervicogenic headache, hemifacial spasm and most likely MCAS ( still looking into this, my next appointment is like 9 months out!). It’s always so much to see all my diagnoses all lined up like that! But they’re me! And I would ALWAYS rather have 15 diagnoses than 0 and still be at the beginning of my diagnosis journey.
Having hEDS is hard! I’m writing this in June 2022. I've had 3 surgeries this year and I’m still writing this from bed in the middle of what has so far been a 3 day migraine flair. All of these things are such a big part of who I am, but I have to remember, they’re not all I am. Chronic illness is hard: there’s no question about it, I hope you find some comfort at Chronic Hope Counseling and Chronic Hope Cares.
