Being diagnosed with an invisible chronic illness is like winning the world’s worst lottery. Seriously, I don’t remember buying any tickets for this lottery! How did I get this lucky?!
The first illness I was diagnosed with was Hyperthyroidism, quickly followed by Graves Disease and then two cancerous nodules were found on my thyroid. They weren’t worried about it at first due to their very small size, but they have since grown, which is now getting the attention of my endocrinologist. That’s just the beginning. If you have one invisible chronic illness, you are more likely to develop others. I recently was confirmed that I have another invisible illness and will soon be embarking on a new journey of tests to find out if it’s Lupus, Fybromyalgia or something else of similar auto-immune illness. I am also getting an additional doctor that will follow me, a rheumatologist. I’m starting a collection! Yay me!
When you suffer from an invisible and incurable illness, you can take all the time in the world to attempt to explain every little detail of your health journey to someone and show medical results, pill bottles and despite all of this, you may still be met with disbelief and questioning. Most people tend to be sceptical about invisible illnesses. The sad truth is that unless your disability is blatantly physically obvious, able-bodied people assume you’re just like them. Because the illness is invisible, people assume we’re faking all the time.
The scariest thing is that many painful chronic illnesses go without acknowledgement or recognition from society and within disability circles. Most people lack the information or experience to empathise with our struggles and this lack of acknowledgement can occur in many ways.
For example, people don’t think you really need that handicapped seat or any seat on the bus or metro. This is why I haven’t taken public transport in over a year. I am lucky that my fiancé and I work nearby and we can get to work together.
At my best, I look like a rather healthy and young person.
It’s important to understand that it’s healthier for us not to push though our pain. It’s better not to force ourselves into uncomfortable situations.
If you are rich or well off, it’s acceptable to get regular massages, to take vacations and to have house cleaners. I can only dream of these things. When pain keeps me from doing basic chores or shopping or dealing with strict work schedules, nobody understand and help is nowhere to be found. My spouse does has much as he can, but he has physical issues of his own. It would be great to have help, but it’s not available. In-home care and pampering activities are often necessities for people who have painful chronic illnesses. I splurged on a cushion that give out heat and massage. I need it in order to get through my work day. I can’t afford to get real massages that could have real health benefits because they are viewed as luxury by my group insurance.
We are not and never will be healthy.