At 17 years old, I was healthy and loved to dance. I fell out of a turn then rolled my ankle, creating a sprain that refused to heal. Some misinformation, ineffective treatment and one year later, I finally agreed to an arthroscopic surgery. What I didn’t understand was that the doctors were already under the impression that the cause of prolonged healing was a result of complex regional pain syndrome. In fact, I had been showing symptoms for years. Swelling, color changes, hypersensitivity, the feeling of searing hot needles inching through me, etc. It was mentioned in a sort of “sounds kind of like this but it’s pretty unlikely” sort of way. Eight years later, it’s what tests and challenges me and shows me what I’m made of.
Post-op, I thought I was on fire. The amount of times I looked at myself convinced I was being attacked or burned alive is ungodly. My PT at the time had more than an inkling that something more than a stubborn sprain was to blame. And referred me to doctors that referred me to other doctors and so on and so forth. Eventually (but more quickly than many), I received the diagnoses. Reflex sympathetic dystrophy, currently recognized as complex regional pain syndrome. A chronic and incurable neurological disorder in which the brain sends pain impulses or signs of injury when there is no longer an injury.
What it looks like: sometimes nothing, sometimes swollen and discolored. What it feels like: sometimes nothing, sometimes like I’m standing on a stove top or in a fire pit. Imagine standing on one foot on top of a bed of heated nails, that are trying to make their way from the toes up to the hip. Or spiders filled with fire running rampant in your veins. Or holding a limb in a bucket of ice water until you feel the ice burn to the core. Sometimes it feels like the original injury that started it all, a furious and angry sprain. Now the nerves are hypersensitive in this leg.
To prevent it from getting worse, physical therapists taught me how to use a hairbrush or rough towel and rub my foot and leg to desensitize my hyperactive nerves. This is excruciating. So are socks. It’s a daily battle to decide whether socks or bare feet on carpet are going to hurt me more. Forget about cold tile or hot asphalt. I used to love hot showers, now I’m grateful for room temperature. Sleep is valued, and my Kindle is one of my greatest treasures. The bad days usually morph into bad nights; pain keeps me up or wakes me up.
The invisibility of it all is a blessing and a curse.
When I’m fine, no one knows. It’s my secret. I’m anonymous like the rest of the world. My struggles appear few and far between, though the pain is likely still there. When I’m not fine, I limp. My limp attracts stares, side steps out of my way, moving over to give me a seat, looks of pity. When I have a flare-up, it’s hard to hide. I grip whatever is nearby. Sometimes I feel so good that when the pain rips me back to reality I have to take off my shoe and make sure there isn’t an actual needle in my foot or secret stash of fire in my shoe.
Some mornings I wake up to the fire, and am unsure if I’ll be able to walk. The unpredictability of this gets to me more than I should let it. It is like a stealthy hunter, and although I know it is lurking out there waiting for me, I am the ill-equipped prey. Flare-ups are inconsistent. Some of the most common triggers are stress, barometric pressure changes (weather), standing for long periods of time, walking for long periods of time and stress.
Sometimes the most intense part of these flare-ups lasts more than a morning, more than a day, and going into the next night it becomes impossible to keep the fears away. I have flashbacks of adventures I haven’t gotten around to or activities that haven’t been tried. It’s in these fluctuations between my past and future that I can’t shake the feeling that I’ve taken my last physical steps. In the vastness of the fire I feel I may be confined to them forever.
It is near impossible to describe the isolation in these flames.
It is frightening and seemingly endless in the middle of a flare-up. It is a dark place known only to those that have been there. It is the opposite of all things good and it works at you until it breaks you. It’s hard, exhausting and unbelievable. And this is where a large part of the problem lies. Even after being medically diagnosed by multiple doctors, it is hard for friends and family to understand this world. How can a person be “fine” one day, then unable to walk the next, and back to fine the day after? These questions are our questions too. As frustrating as it is to be the one physically experiencing the pain, it must be equally as frustrating to not know how to help someone close that is fighting.
There is a stigma that comes with this invisible fight. It is difficult for me to summarize my experiences with this disease into anything that accurately depicts my day-to-day life. For years, I made it a great secret. I did my best to hide all of my weakness until the stress of it all became another weapon for my monster to use against me. In an attempt to increase awareness and free myself, I began sharing my story. Some believe, while others are skeptical.
For the most part, people don’t know what to say. I don’t know either. “It’s in your mind, you should try positive thinking!,” “At least you can walk most days!” and “You don’t even look sick!” are usually the top three things those with chronic pain or illness hear when telling their stories. Another common reflex is for strangers or friends to try offering medical advice. Suggestions of herbal remedies or medications that a friend of a friend has tried are very common. Some may suggest a change in diet, or just ignoring it all together. All of these attempts are undoubtedly rooted in a caring place. I don’t doubt that these sentiments are intended as genuine attempts to help or alleviate pain and struggling. But as a wonderful professor I admire once said, “Sometimes the best way to help is simply to be present.”
The medical fine print of this disease is something those that carry it are familiar with. We are all too familiar with our realities. We search for loopholes, options and alternatives. We want a way out, and fight to maintain whatever control we can. Those that are there to comfort, to listen and to help are my lifelines. I understand the difficulty in understanding those with invisible pain. How can one help something that can’t be seen? But the lack of physical manifestation does not lessen the physical effects I feel. The respect I have for those who stand by me is infinite. From where I stand, my future looks as bright as ever.
I’ve tried therapies and treatments, prescriptions, injections, etc. In fact, several days from now I’ll be having my seventh lumbar injection.
One of the ways I can help myself the most is to stop hiding out of fear of judgment and share my story.
Based on my experiences, judgments frequently come from misinformation or lack of information altogether. A person’s struggles are as much a part of their character as any other aspect of their being, and there is no better way to learn about a person than to ask questions, even when they are difficult. While asking questions does not entitle one to an answer, it provides the possibility of answers and conversations that create opportunities for change and progress. This is how I fight my flames.