Lupus is sometimes called the invisible illness. “Invisible illness” is an umbrella term which means it’s not visible to your average person. Lupus is one of many in this category which includes everything from diabetes to mental illness to autoimmune disorders like lupus and MS.
The invisible illness sufferer is often labeled as lazy or fake while disease wreaks havoc on the inside of their bodies. When trying to explain a disability, sufferers are frequently met with the response, “but you look good” which is one of the most frustrating things to hear. Unsolicited advice on how to get better only adds frustration and exasperation to an already difficult situation. Would if I could just snap out of it! Diet.. exercise.. get rid of all those toxic medicines you take.. lose weight.. change your attitude .. think positive.. are all things I’ve been advised with the best of intentions HOWEVER wishing doesn’t make it so. It’s the ravages of this illness that tear my body apart from the inside out. Unfortunately, all too often, people judge others by what they see. They make conclusions based on the way you look. For most people, it’s difficult to understand someone who “looks fine”, but acts disabled and therefore judgments are made that person couldn’t possibly be sick, because they do not look sick.
Also, I feel doctors don’t hear me when I describe my symptoms. They don’t believe there’s a problem until it’s obvious. Once again, it’s because most of the problems are not visible nor do they have exact tests that can measure how bad my symptoms are. In addition, there are too many doctors that use “cookbook medicine” due to insurance criteria. “cookbook medicine” is treatment based on algorithms in medicine where health providers rely on protocols and rules rather than on an individual approach to the comprehensive needs of a patient. So unless your complaints fall exactly into their guidelines you don’t get the treatment you require. It’s really frustrating! Have you ever heard the saying seen and not heard? That’s how I feel!
The rest of the time I feel invisible. I know people can see me but what I mean is that they see a person but don’t see me, the real me and what I’m going through. People just don’t understand how I feel. Part of that is my fault since I downplay my symptoms because I don’t want to upset family or friends. I also try to avoid complaining all the time. Statistics show, 87% of lupus patients downplay their symptoms. All too often, I say I’m ok even though I’m not just to avoid going into detail about my problems.
There is another factor to consider which is unless you have experienced the symptoms first hand you really can’t understand. The best a sufferer can hope for is support and thoughtfulness. Everyone has had colds, the flu, aches and pains. The option to return to optimal health from that illness or resolve it might include taking an anti-inflammatory, a soothing bath, cold medications and rest. You might even withdraw from the world for a day or two, or up to a week depending on the illness. No one judges a person for that and many may even empathize for the few days when you’re under the weather. Then a normal healthy person gets back on their feet to move on with their life in no time at all. BUT… what if that cold or flu never went away? What if that pain and fatigue doesn’t resolve or even gets worse? What if it caused absence from a job or chronic tardiness? What if the fatigue and pain was so bad that it’s difficult to move around? What if the only thing you could do was lay in bed or on the couch? What if the symptoms caused you to get short tempered, withdrawn or depressed? What if all those things caused you to isolate yourself, to disengage with friends or be unavailable for social activities?
Living with lupus is like having the flu that never goes away. Imagine the anxiety and depression you might feel knowing that what you have was chronic, had no cure, and will be a part of your life for the rest of your life. Then, imagine trying to explain this new problem riddled reality to your family, friends, and co-workers in a way that they would understand when you look perfectly fine on the outside. Denial doesn’t get you anywhere so facing the facts is the best way to move forward. Education and eliciting support not only helps you but also gives family the ability to be supportive. Sometimes, we have to accept that life will not go back to the way it used to be. Best to let go and move forward whatever way we possibly can.
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” – Martin Luther King Jr.