In a vast library of films, I have yet to see an honest depiction of chronic illness and relationships. There are moments that pop up in television series and informative singular tales in documentaries, but they all lack the truth and complexities of navigating intimacy while dealing with a daily disease. I use a broad classification of relationships. This term includes acquaintances, friends, lovers, partners, spouses, and family. It fits anyone with whom I have shared a connection or meaningful moments in time. Over the years, it has become clear just how important my health is when dealing with all…
For the bent, broken, and busted bodies in this world
Zebra looking for an umbrella
Having more than one disease complicates everything. Most of those diseases being rare and understudied turn those complications into catastrophes. Doctors don’t know what to do with you and they truly don’t care to try. When you are already suffering from a mystery, the last thing you want is for your doctor to quit helping. Sometimes that dismissal seals a sufferers decision to give up. It reinforces their anxieties and amplifies their pain. Along with hope, their motivation for life disappears. I asked for help everywhere. At first, I didn’t know what was happening to my body. My early symptoms…
Chasing zzzzzzzzz
I dream of sleep. Laying my head on a pillow, sinking into a pile of blankets or sliding under a crisp cool sheet, taking a slow deep breath and closing my eyes to quickly fade into slumber. Freed from my physical self, my mind drifting over thoughts I didn’t know I had and will never understand. Only waking when my body has been replenished and my head is clear of fog. That delicious fantasy is far from my sleep reality. With chronic disease and pain, comes difficulty sleeping. It doesn’t matter if you are so fatigued that you can’t lift…
Not theirs to break
Lately, there has been a lot of buzz about treating pain with pain. From studies about the psychology of pain to stories about BDSM as a coping mechanism for living with disease, these articles are written by non sufferers and seem lacking in patient perspectives. The concept of treating pain with pain is almost instinctual. For instance, we tend to soothe a sore muscle with rubbing, smacking a bug bite that won’t stop itching, or using the distractive method of pinching your arm when your foot hurts. These techniques absolutely work, temporarily. They overload the nervous system and your brain…
I’m just a girl – Diagnosing part 1
I was 18 years old and living in the American south. It was a new adventure after moving to the U.S just a few years prior. Being eighteen and still adjusting to a new culture, my life was a combination of amazing and incredibly stressful. It was a time before social media. The Internet was not a daily thing, a much simpler time in that regard. That lack of access came with its benefits but also left a lot of us lacking easy access to quality information. About a year into my southern life, I began not feeling well. It…
A walk too far
I am currently staying in a place with good public transportation (by American standards). Not only are the metro stations abundant, the lines are also timely and run across the whole city. There is a stop half a block from my home that takes me to large grocery stores, banks, and other errand locations. Before planning my time here, I had to carefully analyze this urban layout. It had to meet my mobility requirements and provide enough amenities so that I could receive timely deliveries when I couldn’t leave the house. This overly planned style is not how I use…
It’s all in your head
Over these last few months, there have been a number of news and medical publications making the claim that past trauma is the cause of difficult and uncontrollable physical pain. This isn’t a new idea nor is it a conclusive proclamation of why all pain manifests. Of course, it is catchier for journalists to summarize the story using biased language instead of explaining the actual study breakdown in full. There is no definitive proof that historical trauma causes intractable pain and pain disorders. There is no way to accurately measure pain. This makes studying pain and its root causes very…
You look great!
Living with partially or completely invisible illnesses can be an emotional rollercoaster. People are quick to assume everyone not in a chair or without a cane is able-bodied. On one hand, they don’t discriminate against you based on your unseen disability. On the other hand, they don’t give you empathy or the space that you may need to handle your body. When I take public transport, it has to be a high-energy day. I have been asked to standup so that someone mobile can take my seat. I have been jostled and rushed as everyone around me expects me to…
Tricky symptom speak
When you walk into a doctor’s office with acute symptoms, they want to know three things: What are the exact symptoms, what were you doing when the symptoms began, and how bad are the symptoms/pain (often using the ineffective 1-10 scale)? When you walk into a doctor’s office with chronic symptoms, they want to know three things: How long have you been experiencing this symptom, what have other doctors said about this, and are you mentally sound? Through my many years navigating doctors and hospitals, I have found that using highly descriptive language is most effective way to express symptom…
When they ask, “What’s wrong with you?”
My officially diagnosed conditions and their medical definitions are as follows: Ehlers-Danlos Syndrome (EDS) – Hypermobility type: “A group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications”. National Institutes of Health Postural Orthostatic Tachycardia Syndrome (POTS): “Postural orthostatic tachycardia syndrome is a condition that affects circulation. It involves the autonomic nervous system and sympathetic nervous system”. Cleveland Clinic Gastroparesis: “A disorder that slows or stops the movement of food from your stomach…
