In the past, I have struggled in knowing how much to share about a deeply personal matter. I’ve talked about it from the pulpit when I thought it was appropriate, but have never wanted to linger on it for too long lest it appears I’m pining for attention or pity. Someone always has it worse; I would tell myself, and that’s true enough. But I’ve decided that trying to keep my struggle to myself is actually more selfish that talking about it. I cannot help anyone if I remain silent. I cannot receive mutual encouragement from others if I’m closed off.
When you are first diagnosed and suffering from a chronic disease confusion rules the day. How are you supposed to feel when you experience pain, fatigue, and physical limitations on a daily basis? Before all of this started for me, I had never had an injury that didn’t get better quickly. So, how honest should you be when you are asked, “How are you feeling?” and you get tired of giving the same answer every day?
My story progressed from what I thought was a simple hip injury in Taekwondo (2011) to the point of having nerves burned in my back because the pain was so unrelenting (2016). Those hip injuries (both hips) led to two surgeries and further discoveries about a more sinister underlying cause. I remember the first x-ray on my hips and the report mentioning an arthritic bone spur. I remember well the puzzled look on my first orthopedic surgeon when he saw the x-rays of my hips and said that “something is not right” and again I heard the word “arthritis.” And then my actual surgeon who first mentioned the word “ankylosing spondylitis,” (AS) when viewing the x-rays.
An early test came back negative and put it out of my mind, but I still had to follow-up with a rheumatologist after my first hip surgery. She wasn’t in the room with me for five minutes before she told me and my wife that I had AS. I knew a guy from our church who had that disease, though I didn’t know fully what it meant. I had never seen anyone in more pain than him. When I confirmed with his wife that what the doctor told me was the same as what he had, she lamented, “Oh, David, please tell me you don’t have that.”
But I did have that. Fortunately, my situation was not as bad as his and the treatments are much better today, but I wasn’t all the way down the rabbit hole yet. It was August of 2012 when I was diagnosed. By the Summer of 2013, I began to have significant gastrointestinal issues. I already had two close family members with Crohn’s, but tests said I had something even rarer. I had eosinophils (white blood cells that react to allergens) in places they were not supposed to be, a potentially life-threatening matter. I was sent to the Mayo Clinic in Rochester, MN, near the end of 2013.
Thankfully, the worst concerns turned out to be unwarranted. Crohn’s turned out to be the right diagnosis. My G.I. symptoms were responsive to medicines, but the arthritic symptoms would always come back after a while on a new medicine. The pain was usually present in my hips, even after surgery, and my lower back. Soon sitting became the most difficult thing to do. I would sit in my office and the pain would build all day. All I could think about was going home and lying on my side. Besides my hips and back, my shoulders, elbows, wrists, hands, knees, and feet hurt at different times. Some part of my body was always in pain and the back pain worsened in 2015.
That year, I had hernia surgery (unrelated to all of this, though still not fun!) and then made a 15 hour trip to Shanghai on a mission trip. It was almost too much. When I returned to the States, I started the process of having the nerves in my SI joints burned to reduce the pain, but the insurance would only pay for four nerves and I needed six! The other nerves grew back too quickly. In October of 2016, facing another hip surgery and in constant pain, I began to struggle with depression.
By God’s grace, I didn’t continue down that road, but I did start to seek out online communities of people with chronic pain for support. I found a few helpful places to go, but nothing that approached a full-fledged Christian support group. We have grief groups, divorce recovery, addiction recovery, etc., but why was there so little for those struggling with chronic pain? It was then that an idea to start such a group was planted in my heart. About this time, I preached a sermon about dealing with chronic pain and our relationship with God. Five people came forward that morning to ask for prayers. I was one of them.
Since moving to Oklahoma, it has continued to be an up and down battle. I actually had a couple of years where the main was greatly reduced, but it flared again, and on and on we go. I took a class called “Strategic Futuring” at the beginning of this 2018 and began to work on a plan to start a support group. That group met as the initial Broken and Mended support group for nearly two years, until we were shut down by the pandemic. However, in 2020-2021, we continued to meet virtually and were joined by wonder and hurting people from all over the U.S. and even abroad.
In February of 2021, we became a not-for-profit organization. Materials are being developed to start new in-person groups by September of this year. Digitally connecting will always be an option. If you are interested in starting your own Broken and Mended Support group e-mail me at firstname.lastname@example.org.
I plan to use this website as an arm of that ministry. I want to connect hurting people to Jesus through the local church. If you are reading and don’t struggle with chronic pain, then be thankful, but listen to others. There are probably dozens of similar stories in your own sphere of influence. Try to listen. Withhold judgment and advice. Someone that is hurting sometimes just needs to tell their story.