Everyone wants to look their very best at all times, right? For those with chronic illnesses, simply getting out of bed can be a monumental task, let alone looking "good". Chronic illnesses take a huge toll on sufferers' bodies physically, mentally, and emotionally. Over the years, I've experienced a few things that absolutely drive me crazy about my body. I've learned that there's not much I can do, so I might as well at least try not to be overly concerned about my appearance.
A common problem many chronic illness warriors have is excessive weight loss or weight gain. Medications like steroids are notorious for causing significant weight gain. When combined with the reduced ability to engage in physical activity, it is very for the weight to climb up. On the other hand, frequent gastrointestinal issues from any number of causes, can cause dramatic, excessive, and completely inadvertent weight loss. Sometimes, it gets so critical, that a feeding tube is necessary to attempt to prevent malnutrition. I've been on both sides of the spectrum within the last year alone and it drives me crazy when people talk about my weight regardless of whether it's good or not. Either way, I'm not going to weigh the same thing in three months.
I've never been one to obsess about my appearance, but I recently started losing my hair a lot! Fistfuls after fistfuls of hair leave my head every time I brush my hair, wash my hair... Do anything to my hair basically! Of course it's normal for some hair to break or fall out, but this much. I have always had baby fine hair and it's usually not a problem, except when the remaining hair is really thin. I recently made the difficult decision to have my long hair cut short in hopes that it would stop falling out so much. Well, it helped a little, but it still comes out in bunches. Hopefully, my special shampoo and the biotin I've been taking will help soon. This is a very common problem as a result of the medical conditions themselves, malnutrition, vitamin deficiencies, and medications to name a few.
Everyone seems to be afraid of scars. But why? They are like little pictures that tell a story and no two scars are alike. Scars from IVs line my hands, wrists, and arms, but they are a symbols of all the ketamine infusions, blood tests, contrast for CT scans, and plain old IVs for hydration and medication administration in the ER. My back is littered with scars from hundreds of trigger point injections, countless epidurals, and a bunch of surgical scars. My fingers and hands have multiple scars, 2 from surgeries and 1 from accidentally slicing my finger open on the Operation game when I was 4 (Ironic, right?). I have a surgical scar on my chest from my port placement. Even though no one can really see them, I have one scar behind each of my ears from my cochlear implant surgeries and so many more. This same kind of story is very common among chronic illness warriors. I'm proud of my scars because they tell and I hope you are too. Sometimes the scars you can't see are the very ones that change us the most.
One of the least visible effects of many chronic illnesses is the mental illnesses that develop as a direct result of being sick. It is super important to remember this. Depression and anxiety often arise from the strain and loneliness of chronic illness. PTSD may result from bad experiences with physicians, near-death experiences, and poor hospital stays. Eating disorders may result because of a need for control over a body where control is hard to come by. This is by no means a comprehensive list, but these are a few of the most common mental illnesses, resulting from dealing with chronic illness.
There are some very intelligent people with chronic illnesses that when dealing with "brain fog", are incapable of doing certain things like carrying out a conversation or doing a simple math calculation. This symptom can be very annoying and is not necessarily treatable. It is unfortunate that it can make some of the smartest of people seem uneducated. Don't ask me to read out loud when my "brain fog" is bad, because it is not pretty and I look like a fool.
The more obvious physical, emotional, and mental changes in individuals that are chronically ill are often very hard to deal with. That is why it is so imperative to be careful about the way that compliments are given and refrain from commenting on weight, as some well-intentioned compliments can actually be quite offensive. As long as you love people with chronic illnesses for who they are inside, you will be on the right path!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!