Invisible Disabilities: But You Don't Look Ill!

In our beauty centric and vain society, where people are judged by their address or the cars they drive, the disabled stand out easily. Or do they? The cane, the walker, wheelchair or floppy bodies of the special needs population are very evident.

Yet there is an enormous pool of often critically ill people who wear no outer marks of the processes that are slowly but surely killing them. These are the ones suffering with diabetes, MS, CFS, Lupus, Crohn's and a host of other silent killers. They bear no signposts that help identify their suffering and are often treated with impatience and intolerance by others who have no idea of their daily struggles just to live.

InA friend of mine , Annina points out the cruelty of the judgements made by family and friends in asking "What happened to you?" "You used to be so beautiful" OUCH! I know this type of casual unthinking cruelty and ignorance all too well.

First, because we often have to struggle to even get out of bed most mornings, we look and feel exhausted almost every day. The rosy pink cheeks lupus sufferers display aren't a sign of health, they are warnings the disease is busily eating away at bone, tissue and cartilage, not to mention, destroying hearts, kidneys and lungs.

Yet it's a rare day someone doesn't remark, "but you can't be sick, you look so healthy!" The often swollen moon face caused by high dose prednisone therapy often elicits the "gee, you sure have put on weight!" reaction from others who have no idea of how ignorant they sound.

Then there's the remarks about being lazy, always tired, always ill. I often think in my colder moments, let's switch bodies shall we??? MS and all the other autoimmune disorders not only cause this enormous fatigue that comes out of nowhere, it often is accompanied by crushing pain in muscles, joints and kidneys. Or bone pain so severe, we have no choice but to cry.

We deal with pain and other mobility issues that we rarely share, save with other silent sufferers. Only there can we find another who truly understands the small victories of just getting up, having 15 blessed minutes without pain, or fighting to be the best we can be.

Not only do we do we have to fight alone, but we always have to be so very careful not to "bore" or stress family and friends with our little woes. In a culture that worships at the altar of quick fixes, even physicians can be intolerant of chronic illness and pain. One physician told me how stressed he was because "he couldn't just give his chronic patients a pill and resolve it in two weeks." "So he'd rather refer them out"

We must fight, until diagnosed with the health care system, against the notion we are somehow malingering or just want pain medicines to "escape" from reality. Yeah right. Because these diseases cause intense embarrassment and discomfort for ourselves and those around us, we often have to perform this delicate dance between not complaining, and finding places to be able to truly say, "It hurts, it never stops, help this trapped soul dying by inches to make it just 5 more minutes."

Here , on the 'net, those who have suffered in silence far too long, have a place to safely share not only the great victories over these diseases, but those bad moments too, without fear of being judged a "whiner" or attention seeker. The internet has proven such a blessing for us. Here we are not judged for being ill, we are treated on our own merits. No one can see the tears often running down our faces, as we sit at keyboards typing words of comfort or love to others. Or creating literary work of amazing grace and sensitivity. We soar, we transcend the boundaries of physical pain and emotional solitude here.

And now, thanks to others vision, slowly, one by one we step forward and say what needs to be said. We are not defined by our disabilities, we are more than that, and realize that in sharing with others we create a better more compassionate world. Jessie Voights, Annina, Liz Rice-Sozne, Chris Bell, and Maureen are the lamplighters showing others their profiles in courage. The love, warmth and incredible honesty, not to mention courage in bringing these issues to the forefront of our awareness, has created a place here that is priceless. Thank you for being the great human beings you all are. Because of your honesty, other weary travellers along the often very lonely road of hidden disability will finally see there IS another side of Never. And it's here online, wherever or however we gather together in love and support..