Guest post by Ania Bula. Ania blogs at Scribbles and Rants.
When I was 18, I was diagnosed with Psoriatic Arthritis. The following year, I lost the ability to walk, and was ignored by doctors who looked at my age before my symptoms. I struggled with finding a treatment and getting some mobility back.
When I was 20, I started experiencing some mysterious symptoms, including rapid weight loss, pain, bleeding, and more. I desperately searched for an answer, and eventually, a treatment. What would turn out to be Crohn’s disease came very close to killing me. I was flushing my life down the toilet.
The journey itself, to diagnosis and treatment, was incredible, difficult, and enlightening. Chronic illness is an invitation for everyone to comment: either with regards to a cause, a treatment, or otherwise. Suddenly, everyone’s aunt is an expert and everyone’s fad diet a cure. You wade through a constant stream of ignorance and lies, in a desperate attempt to find peace and a stop to pain. In my years living with both disorders I have been faith healed, poked, prodded, stuffed with powders and magic potions.
When your disability isn’t written across your body for the world to see, there is a constant need to validate your need for self-care. There is also something more isolating about not being able to readily identify other people who are going through the same thing you are. When you walk down the street, you can’t know just from looking if someone else out there knows what it is like to feel your pain.
Healthy people don’t know how to react to you. Some trivialize your experiences either because they don’t believe you are sick or out of a desperate attempt to convince you that they are not judging you based on your disability. They point out that you don’t look sick, or that other people they know with the same condition don’t have nearly as much trouble. Some will try to blame other causes that have nothing to do with your condition. Others are thrown to other extremes and feel like they must keep reminding you of your weakness in order to keep you from harm. They overcompensate for their own discomfort, by making it seem that they are looking out for you. These are the people who are hyper-alert for any sign that you are not at your best so that they can lecture you about taking it easy. Since you are never really at your best, this can get grating really fast.
It is difficult to strike that happy balance of treating you like an independent human being, who sometimes needs to be more careful about what they eat and do, or perhaps cannot go out as often as everyone else. You might feel as though you constantly have to justify yourself. That no, it is not just laziness that kept you in your pyjamas all day, or that you really do like their cooking but that yogurt keeps you up in pain all night. You worry that eventually everyone around you will be sick of trying and that you will be left friendless and alone.
Throughout all the self-doubt and loneliness, you are also struggling with managing your symptoms. No matter what your condition, exhaustion is a constant. Being sick takes a toll on your body and your mind, so that some days it can be an effort just to get out of bed. For many of us, pain is another constant companion.
I am writing about my experiences in a book called Young, Sick, and Invisible: A Skeptic’s Journey with Chronic Illness and I am funding it through IndieGoGo. Your support will help me through the writing process, while also rewarding you with a copy of the finished work. In the long run, I am hoping to raise awareness about what it is like to have an invisible disability, as well as highlight the evil of the con men peddling alternative “medicine” and “miracle cures”. I need your help to make this happen. Every little bit helps, as does every share and retweet.