How do you find the strength to get yourself up and going when suffering from a chronic, rare or genetic disease/disorder that is little known or has no cure? One that causes pain, weakness, exhaustion, depression, dislocations, nausea, dizziness, migraines, to name but a few?
How do you keep a job, get to work or run your own business when you suffer from chronic migraines?How do you survive when you can hardly climb the stairs of your home, if you have one?How do you keep the hope, not give up and keep going when your body breaks down every day?How do you manage your relationships, your social life, business, networking, errands, grocery shopping, doctors appointments, physio, treatments and the lot?How do you manage to live and have a life?
These are questions between which lines hides the reality of millions of people suffering from autoimmune diseases, genetic disorders or conditions, chronic fatigue, fibromyalgia, Myalgic Encephalitis, Lyme disease and not only. Ailments and conditions that with some exceptions may not be life threatening but do cause differing degrees of disability to the individual. Sometimes people manage to keep working, sometimes they don’t. Some keep their independence, some have to rely on others.
It is when the disease/disorder gets to the point of robbing one of their ability to survive on their own that things can get pretty ugly and depressing. The threat to livelihood is constant and brutal, independence gets snatched and people in this situation find themselves at the mercy of their predicament.
One might ask, how does this differ from the millions of people suffering or dying from various diseases every day? There is only one difference and that pertains especially to those suffering from rare or little known diseases or disorders. The difference is that someone with an invisible disability is not considered ‘sick’ by their social environment and is expected to be able to pull through like the rest of the people when they can’t.