A good friend of mine, Ania Bula (@DearAnia), wrote a book that needs some attention. The following is guest post written by her, starting with an excerpt from the book.
Now I’ll let her speak:
Over the course of the several weeks, what should have been just a hip sprain got progressively worse. Soon my whole right leg was on fire with never ending pain. Every step made me feel as though my tibia would shatter beneath me. I swear that I could feel the pressure fractures forming. In the mornings, my body was so stiff that even the lightest pressure was pain. At night, falling asleep was a difficult process, as I tried to find the least painful position. When my leg started losing feeling and giving out beneath me, I realized I couldn’t ignore it by assuming that this was all just a normal “sprain”. I realized that the symptoms indicated something more severe and that I should have it checked out.
With the loss of feeling and support in the limb, not to mention the jumps in pain, I wondered about the possibility of a pinched nerve, a blood clot, or something else. I even had it suggested that I might have bone tuberculosis. This last one was somewhat plausible as a relative had been suffering from TB when I had visited family in Poland, and other people in our community were possible “healthy” carriers. I finally decided to go see a doctor to discuss my worries.
Even at this point, I was no stranger to pain. I had had mysterious joint pain for as long as I can remember. They were especially common in high school. I can clearly remember several occasions where I spent a few days to up to a week limping. On multiple occasions I brought it up with my parents, only to be told that all I had to do was lose weight. On the few occasions when I managed to get an appointment with a doctor, often the appointment involved a parent asking the doctor to tell me about how all my issues would be solved if I lost weight.
Eventually, it didn’t even need my parent’s presence to get that response. It was firmly ingrained in doctor’s minds that any complaint that could be explained away as being the result of fat, should be. The closest I came to being taken seriously was when my doctor diagnosed me with Putello syndrome. I often wonder how much pain I could have saved myself, how much of my eventual disability I could have saved myself from had I pushed past the preconceptions set up by my parents. It is easy to get caught in the trap of what would have been, of blame, and self-hate. So why didn’t I push past it? Why didn’t I self-advocate and demand that I be taken seriously? Because to some extent not being taken seriously by doctors, being told that I was overreacting was conditioned early.
This is a small part of a story of pain that would last more than 7 years, to this very day. A story of not being believed, or being ridiculed and assumed to be lying, of learning how to make doctors believe me, and of learning to cope with an invisible disability. It is a story that I hope will serve as a lesson to skeptics everywhere about why a good healthcare system matters. About why pushers of alternative meds are nothing more than con artists preying on the weak and the desperate. About what it is like to live with an invisible disability in our society.
Living with a chronic illness poses a series of unique challenges. 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. It can be very lonely.
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, and now is my opportunity to tell everyone about it.
There are only 37 hours left for the IndieGoGo fundraiser to make this book a reality. You can donate here: http://igg.me/at/sickskeptic/x/2469352
Once the time runs out, I will still be accepting donations to the project through my blog at www.aniasworkinprogress.com
All the funds will help go to promotion, advertising, and publishing costs.
Also welcome are people’s stories and comments, and any help with promotion.
and back to me for a minute. Go and check this out. This is one of the things skepticism should be doing.