Dear Ignorant People
Dear ignorant people,
Someone once told me that SLE Lupus is the same as asthma, so I made it my mission to educate others of what autoimmune disease is.
SLE Lupus has lung issues that are commonly associated with asthma symptoms, but not only are the lungs affected, other organs of the body are, such as the heart, kidneys, blood, skin and the brain.
An autoimmune disease comes under the bracket of invisible illnesses. An invisible illness refers to any medical condition that is not outwardly visible to others, even to healthcare professionals. Some people want to try to help out but don't understand how much autoimmune disease can become someone's livelihood. Here are some important points to understand our lives with an autoimmune disease.
But you don't look sick
The way a person looks should not and does not define our wellness. It's undermining the fact that "I feel like shit" and “I am in pain and feel exhausted." We use multiple spoons for getting up, ( refer to Christine Miserandino's original theory).Many of my close friends and family have stated “you're looking well” when in fact I am feeling exhausted and vulnerable because my immune system is attacking itself and this is the reality of living with an autoimmune disease.
Age doesn't matter
At any age an individual can experience their first symptoms. I started showing symptoms at the age of 11 with severe joint pain, breathlessness when lying flat and chest pains. I was diagnosed with SLE Lupus at the age of 12 and at that time I was the youngest ever to be diagnosed with SLE Lupus.
There is no cure
Autoimmune disease is not the same as cancer or an infection which has the goal to get rid of the body’s bad cells. If the immune system is compromised it is unable to protect the body from cancers and infections. Autoimmune disease can only be managed with a cocktail of anti-inflammatory drugs and corticosteroids that manages pain and acute flare ups. Types of painkillers can ease pain, but only for a short period of time, such as codeine, morphine and paracodeine. SLE Lupus can be managed but is not curable!
The pain isn't always surface-level
Those of us with autoimmune disease experience chronic pain which impacts our daily lives. Sometimes it's not obvious to the human eye. I conducted an experiment where I took a bus without my walking stick. No one offered me a seat and the bus driver tried to drive away when I was half off and I fell off the bus. The time I took my walking stick the bus driver lowered the bus so I could get on more smoothly and strangers offered me seats. The bus driver waited until I was completely off the bus before he drove away. My hypothesis was that people only get help when you can see their disability which is unjust for those with chronic disease.
We are resilient
Just because we have autoimmune disease does not make us weaker. It makes us stronger because we are determined to achieve our goals; despite our own bodies attacking itself. We still get to the goal, it takes longer but we get there. Resilience means the capacity to withstand or recover quickly from life challenges.
I may look 'normal' but sometimes I don't feel it. Please respect that!
We often face continual judgment from others, including health professionals. I have faced judgment when I have not been in my wheelchair or with my walking stick. An example would be just after my open heart surgery, when I needed to take the taxi to and from the doctors to get a follow-up. During the drive down the hill I asked the driver to help me open the door while I was holding my chest compression. He sat there till I managed to open the door. I told him I just had open-heart surgery and his response was him stating I'm young and I'll get over it quickly. On the drive up the taxi driver started shaking his head so I told him to keep his judgment to himself.
Be kind to others because you don't know what the other person is going through.