You can’t always see it.
But for some, it’s always there. Shooting, aching, or lurking.
Thankfully, I’ve learned how to manage it and avoid it, for the most part.
Although my pain has a name, the diagnosis (which came after a 23-year mystery) wasn’t an answer. At least not a long-term one. There is no cure for Generalized Lymphatic Anomaly (GLA) or Gorham’s Disease (also known as: disappearing bone disease). I am thankful I now know a few things about what has wreaked havoc on my bones, but there are still a lot of questions.
Since I was diagnosed in 2011, doctors have made incredible discoveries about the workings of these diseases, but there is still no cure. As an adult with GLA and GD, I have been a bit of a clinical guinea pig in terms of research. My specialists have often relied on my own symptom reporting to provide treatment suggestions, because the patient pool isn’t very deep, and to be a ‘specialist’ means you’ve worked with a handful or two of people (mostly children) with these anomalies.
My case isn’t too different than the 300 million other cases of rare diseases worldwide (rarediseaseday.org). Sure, the details and intricacies vary greatly, but each of the stories have similar themes: people often feel misunderstood, getting a diagnosis can take years or even decades, and/or the symptoms are sometimes invisible and are doubted or explained away by others. Those are the big ones.
I already shared that my diagnosis took over 20 years. The day I met a doctor (Dr. K.) who actually listened and confirmed all of my struggles as symptoms of this strange lymphatic anomaly was so relieving. Years of doubt and disbelief and “I’m just not sure” from the medical community starts to take a toll and had me doubting myself at times. What a gift it is to have a name for what ailed me for so many years and continues to do so to this day.
I have learned to live with many of my symptoms, and sometimes forget that they are not part of everyone’s day. I do want to illustrate the point that even though someone may be enduring invisible pain, it doesn’t mean it doesn’t exist. The importance of this is that we never know what others may be going through, and therefore should treat others how we want to be treated (The Bible, Matthew 22:36-41).
Both GLA and GD start at conception. This isn’t a post about these particular diseases, so I won’t go into too much detail, but essentially I have lived with them my entire life. Certainly I have experienced some symptoms for as long as I can remember (migraines, and knee pain), but some things changed pretty drastically in my early 20’s.
After a week long hospital stay, I was diagnosed with a rare malformation called Chiari Malformation. I had brain surgery a month later, and have not been the same since. I am so grateful that my personality didn’t change, but I do want to highlight the invisible, little things that did.
The following is not a list to make you pity me, but quite the contrary. I want you to know that there are so many people (your friends, neighbors, co-workers, maybe even YOU) living with invisible pain and choosing joy. Have compassion.
Simple things that can cause invisible pain:
-Wearing my hair up for more than a few hours causes severe neck pain
-Walking from the house to the car in 85 degree heat can leave me with a searing, debilitating headache
-Doing anything repetitive for more than about 15 minutes causes neck pain that makes it hard to get out of bed the next morning (real-life examples: cleaning grout, playing the violin, sitting too far to the right or left at church or even while watching tv or a movie and having to look towards the center)
-Working out has to be very low-key (swimming, stretching, walking, etc.) or I risk the debilitating neck pain
-Sleeping anywhere other than a bed causes neck pain the next morning
-Any cold or simple infection has the potential to lead to meningitis (I’ve been diagnosed 4 times).
These things may seem minor, and they most certainly are compared to what else can be caused by disease, but I chose them for this list on purpose. It is certainly not an exhaustive list. Living with a chronic disease is hard. Even the simplest things, like cleaning grout (bleh) can be difficult or even impossible. I am only able to live joyfully because of my trust in Jesus. Without it, the struggles would be overwhelming and depressing. Thankfully, my friends and family offer grace and have always supported me, but I know that is not the case for a lot of people living with invisible pain. Let’s change that.
If you also deal with invisible pain, I pray you were comforted by this. Share it with others so that everyone can be more aware that people are dealing with stuff. I write this recognizing that many people also struggle with invisible pain that is not physical, but is mental or spiritual. We need to extend the same grace to them as we would to someone who has outward appearances of pain.
Would you treat your friend who was struggling with invisible pain (physical, spiritual, or mental) with the same sympathy and compassion as the friend with a broken leg?
Your response may be to question how you can if you don’t know the pain exists. I think this is where we learn to be more vulnerable with each other about things that are unseen. Normalize discussions about pain. When someone shares about their invisible pain, let’s not assume they want pity. Compassion and empathy are much more desirable responses, at least in my opinion. But don’t let me speak for your friends and neighbors. Ask them yourself. ;)