I think one of the hardest things you have to go through in life is grief. To lose someone you love, a friend, a family member, it can be devastating. But what about someone who is chronically ill? How do you accept that their life is full of suffering every day? How can you come to terms that they only have so much time to live? Or even worse, how do you live every day, watching them suffer, and not being able to take away their pain? What is worse: losing someone quickly and painlessly, or watching them suffer out till their final days? Honestly, it all is terrible, but from personal experience watching your loved one fight a chronic illness takes a toll on everyone.
My sister was diagnosed with Lupus, an auto-immune disease when she was only twenty-one. Twenty-one; the year that marks freedom for every young adult. The year where you go out, travel, socialize, and not have a single care in the world. Instead, my sister had to accept that those times were over, and had to take on a battle she had no choice in fighting.
My sister ended up moving back in with us that year because she became incapable of taking care of herself. She could no longer bathe, clothe, and feed herself. She could not walk, get into her bed at night, or drive. Simple things that we do not think twice about became her biggest obstacles. On top of losing her freedom, independence, and health she also lost her dignity. To become completely dependent on your family for everything affected her tremendously, and it was only the beginning.
The Lupus was spreading rapidly. Her immune system became hyperactive and was attacking every organ in her body. She lost lung capacity, was told her kidneys were failing, and had intense chest pain. She once described that taking one step felt as if every bone in her body was breaking. Her skin would flare up in huge rashes that were impossible to hide. But nothing could compare to the emotional pain she suffered from. To know her body was failing her was so hard to accept.
The issue with Lupus, is that it effects everyone differently. You cannot see it, just how you cannot see cancer. Occasionally my sister would have flair-ups and would end up being hospitalized. Medical professionals would pass her off as "drug seeking" and even one time was sent home saying she had the flu. They would think my sister was making everything up because she looked healthy, when in reality her body was destroying itself. She would return home, feeling helpless and would cry to me saying how she wishes she could just give up. She did not want to fight anymore.
My sister eventually began treatment, which was a form of chemotherapy. Then after that was given medication to help her reach remission. After a year she was able to gain mobility back and was slowly becoming more and more independent. Although she was losing hair and was not allowed in the sun she began to gain her life back.
It has been three years since her diagnosis and the recovery she has made is impressive. She is currently in remission but is still battling the disease with treatment. We have all come to accept that this will always be a part of her life, but Lupus does not define her. She is a fighter and the strongest person I know.
To learn more about Lupus please visit The Lupus Foundation of America.
