How we face the misconceptions and stigma around lupus.
“Disabled” and “handicapped” aren’t two words society often associates with people who aren’t visibly disabled, but live with chronic illness and pain. There is a notion that in order to be sick, there must be evident, visible signs, such as assistive devices or mobility issues. Our society often ignores the existence of chronic illness, especially when diseases are invisible and/or don’t fit in the mainstream ideal of what being sick should look like.
At least 10 percent of the United States population is considered invisibly disabled according to Disabled World. The outside world sees chronically ill people as normal and assumes they function at the same level as healthy people do because their symptoms are often not seen.
Here are some of the realities we deal with as a result of society’s misconceptions about chronic illness:
1. We don’t look sick.
Life is already complicated enough with pain, illness symptoms, and limitations, but appearing healthy presents another challenge. Our society has developed a specific but indescribable idea of what being sick “looks” like. And so many are faced with the additional challenges of disbelief, poor treatment, judgment, and unsolicited advice about unfounded cures and unproved healing methods. This makes us feel like we are being called liars, wimps or hypochondriacs, which can create strain in relationships and ultimately isolation.
2. We want to get better.
When we are not improving and our symptoms get worse, we lose faith in our doctors and in medicine. No one wants to be sick or feel alone or misunderstood, but more than that, we’d like to get better.
3. We feel self-blame.
It’s easy to feel that you’ve done something to cause your body to break down. It’s easy to be hard on yourself, which adds to the burden you already carry. In some secret way, we punish our bodies for failing us as we dwell on a life that is now forever changed.
4. We’re too young for this.
Society’s expectation and definition of good health hits chronically ill young adults the hardest. When you have hadn’t had a chance to live life on your terms due to illness, you struggle to find freedom while trying to follow your dreams. And for those who want to start families, the burden of chronic illness brings with it a fear that creating a biological family might not be possible.
5. We need to stand up for ourselves.
When people don’t believe you, you’ve got to stand up for yourself and remind them you are trying your best manage your situation. We know that there are good things ahead and we are choosing to accept this regardless of the opinions of others.
6. Sometimes, we hide our pain.
Years of living with pain and extreme discomfort, most of us have become experts on hiding it. We choose to because sometimes we just don’t want others, especially loved ones, to see how bad it is.
7. We are doing the best we can.
We are doing our best to educate others about what we go through to help them understand. We are also doing our best to manage our pain and symptoms every day because we don’t want to be a burden on anyone.
There will always be someone with an opinion about your health and your life, and ignorance is plentiful. As people living with illness, we need to prioritize our health. Whatever challenges illness brings, we always have the final choice to choose what we feel and believe.