i’ve considered writing about this several times but because I, personally, am not constantly and relentlessly affected by it as much as in the past, i had not. Yesterday I was talking with a very sweet girl i know that also suffers from constant chronic pain and we were discussing how it can absolutely disrupt your life and be extremely depressing. And its true, it does. I would know.
Little back story; i was born with hip dysplasia, except that they didn’t catch it until i was 18 months old. I was in a full body cast for 6 months and had 7 surgeries. When i was 13, i was diagnosed with extreme degenerative disc disease. DDD is actually extremely common and many adults have mild to severe variations of it. But at 13 you don’t see it, ever, let alone see how bad it was. For the following 10 years I struggled with PT, injections, and a lot of pain. When i was 23 i had my first back surgery. It failed and i was worse off that i was beforehand. There was almost a year where i had to use a cane or a walker and could barely walk anywhere on my own. Three years ago I had a spinal fusion and that surgeon handed my life back to me. Two years ago I began having GI problems. First they removed my gallbladder, and then they discovered that I have an extremely rare congenital defect in my pancreas. I have had pancreatitis 5 times in 3 years, which is pretty bad. Issues with your pancreas can become very dangerous. I also have an unrelated type of inflammatory bowel disease.
So thats crazy right? That is A LOT of shit to have wrong with me at 29 years old. And if you met me at a party and talked to me for 10 minutes or met me through work or a mutual friend, you would have absolutely no idea that all this stuff is wrong with my body.
Don’t get me wrong, I have been extremely fortunate. My spinal fusion gave me my quality of life back beyond anything I could have even dreamed of. The surgery on my pancreas semi-corrected the defect, for now at least. The IBD that I have is being treated with medications that really help my symptoms and my GI doctor is extremely supportive and helpful.
But because of the hip dysplasia I was born with I will likely need a hip replacement within 15 years. When I was a baby the doctors said it would probably need to happen by the time I turned 30 but fortunately I have yet to have any hip problems. I’ll eventually need another level of my spine fused because the levels above and below the fusion are deteriorating. In the next couple years they will have to go back in and place new stents in my pancreas. And because of the bouts of pancreatitis I’m at a higher risk for developing pancreatic cancer, which typically has a survival rate of 20% for one year, and just 7% for five years.
And then of course theres my anxiety and depression. Sheesh.
So anyway, I have all these illnesses and medical conditions, but if you saw me on the street you would have no idea. Even some of the people close to me seem to forget and even get annoyed with me if I tell them I can’t do something or I’m not feeling up to it that day, because 98% of the time, I “look fine”.
Before I had my spinal fusion and I was in so much pain that I had to crawl to the bathroom on my hands and knees, I always had to tell people no. No, I can’t come to your birthday, your wedding, your baby shower, etc. and people got pissed. I believe that if I had broken both my legs and had them in hard casts, every single person would have been so much more sympathetic. I’m not saying I wanted attention or people to feel sorry for me. I just wanted people to understand that just because usually I look totally normal and healthy, I have a crazy amount of medical issues and illnesses and sometimes even just going to the grocery store isn’t possible that day.
So, so, so many people live with chronic pain, they live with all of these conditions that literally control their whole lives but people get annoyed if it affects them because they can’t “see” that anything is wrong. The same goes for mental illness. We need to be better humans. We need to be compassionate. We need to not judge those we don’t know, because millions of people live with invisible pain.