People with bent and broken bodies are often presumed to be weak. We are thought to have the same mental and emotional deficits that our external selves display. This becomes even more complicated with invisible disabilities. Looking healthy but having physical challenges means that people assume laziness and lies on top of the incorrect belief that we are broken all the way through. While the world reels from Covid-19, we’ve seen a number of arguments pop up explaining why visibly disabled people will be treated less effectively. They will be seen as already damaged. Their quality of life is assumed…
For the bent, broken, and busted bodies in this world
Bedknobs
I don’t currently live with anyone. Over the years I’ve lived alone and shared a home with roommates, friends, partners, and family. There are many positives about having a space to yourself. I think we can all understand the pleasures of finding out that your bustling or shared household is yours alone for a single day. Turning that momentary bliss into an extended reality is pretty great. Of course, there are negatives as well. Cohabitating brings love, interest, joy, and drama to even the quietest home and individualistic person. One of the most glaring issues of living alone as a…
Risk verses reward
Lately, #HighRiskCovid19 has been trending. It’s a small but effective way for those at high-risk of contracting Coronavirus to been seen as real. By posting a portrait and a quick rundown of their reasons for being vulnerable, social media users might absorb the reality that their world is full of physically compromised and invisibly ill individuals. Maybe if they see us, healthy people will be more aware of the importance of flattening the curve and social distancing. At least that’s the hope. It has been interesting to watch the world adjust to our daily battle of…”Is _____ worth it?” The…
Virus light
I get sick a lot. Most of the time it is a simple cold. Occasionally, my body turns sniffles or a cough into bronchitis, strep throat, pneumonia, or some weird iteration of the flu. My immune system is compromised for an unknown reason. Like many people with chronic diseases, my body is angry and permanently fighting. Inflammation runs wild, allergy markers live at high levels, and constant new symptoms emerge. I’m at a high-risk for contagious diseases. Because of this, and my underlying conditions, I have a cautious life. Not by choice, of course, but by necessity. Since fevers pop…
Trickiness of time
Someone recently asked me how long ago my medical issues started. With a blank stare and stuttered excuse, I realized that I couldn’t answer that question accurately. I began to wonder if I was lacking as a proactive patient. Here’s the thing, I’m not sure that I want to have a perfect schedule and exact history of my diseases. I have approximations, ideas, sporadic notes, and well-intentioned guesses alongside crystal clear bad days and dramatic episodes. There are certainly dates and times logged in hospitals and doctor’s offices. I could spend my time, effort, and money collecting all my medical…
Coming around
It seems fake. I mean, whose legs aren’t restless? Is there anyone who can sit or lay comfortably in one position without needing to shift? Everyone needs to move from time to time. But, it turns out that Restless Leg Syndrome is a just a terrible name for a real disorder. I think it falls under the same name-fail as Chronic Fatigue Syndrome. So, RLS is an actual condition and I have it. It started slowly and developed as a branch off of my Autonomic Small Fiber Neuropathy symptoms. I want to discuss what RLS truly feels like. The commercials…
Slogging through hygiene
It’s the more unspoken part of dealing with chronic illness. If being able to get out of bed or going to a doctor’s appointment is a big win, taking care of your daily hygiene needs makes up all the tiny victories in between. It seems so simple. Just take a few minutes to clean yourself and your surroundings. All you need to do is brush your teeth, shower, shave, wash your hair, moisturize, trim your nails, change your clothes, etc. But, simplicity rarely exists in our realities. Surviving the microseconds is where we live. When everything hurts, maintaining the squishy…
Achoo!
Dealing with chronic disease forces you to expect the unexpected. New symptoms and weird manifestations of the disorders pop up all the time. Occasionally, a non-related medical issue will present and you have to figure out if it is truly a new symptom or a manifestation stemming from a previous condition. As you know, all those aches and pains that encapsulate chronic diseases show up in wildly diverse ways. One of my daily symptoms is nausea. It can be severe or mild, but it is always there. Because of this, when I’m coming down with the flu or even food…
Opioids and Judgy McJudgerson
Take a deep breath. This is going to be one of the most polarizing issues that we discuss here. It’s also going to be a long post. However, no matter how long the column is it won’t be long or detailed enough. Pain and pain management is a very complicated discussion. It is intensely personal and biased, even when science is discussed. My position is different from most people. The way I think about pain has changed over time. It can probably be split into three categories: before illness, start of illness, and chronic sufferer. BEFORE: I was anti-pain medication.…
Life saving distractions
You aren’t lazy. Nothing about coping with chronic illness and pain equates to slothfulness. Each moment that you decide to stay in the fight is brave and exhausting. Every second that you don’t give over to the ease of eternal sleep shows enormous strength and fortitude. You are amazing and your struggle is acknowledged by the millions of us who gear up to face each day. It is difficult to find distractions from pain and other loud symptoms. I often have to use multiple techniques at once. This might look like someone with an attention problem to an outsider. If…
