Stigma and Shame I Have Encountered
Last updated: August 2021
Someone told me that I disgust them. Someone told me that I should kill myself. Someone asked me, why I would bring a child into the world knowing that I am going to die and leave her alone without a mother. How could I be so clueless and not care about someone’s life like that? I should be ashamed. Someone told me I do not deserve to live because I would not do what they wanted me to do to my body.
Unsolicitied advice hurts
It is hard facing someone who thinks that there is completely right all the time. I once encountered a boy whose mother had lupus and he cursed me out and told me that I was disgusting and that my disease was going to kill me. I felt as if he should not be like that because his mother has the same disease. I blocked him because he tried to ask me for help after that and there was no way possible that I was going to even give him the time of day.
Having supportive people matters
You should not put down people because you do not know how you will need that person later in life. There are times where I experienced things within my own family that was like, "I can not believe you just told me that." It was not my close family, but I felt that they were my family. If you already battle insecurities, then you already feel bad when people tell you that you should be grateful to be with someone because they could have left you because of your sickness. That can be very hurtful at times.
How can I live my best life?
Living with lupus, I already deal with people that put me down and we already go through depression all the time. With battling with hair loss and appearance, then the loss of friends because of your health, then you cannot work sometimes and no school. Some people say that you should be living your best life but how can you live your best life? That costs a lot of money to be living your best life. How can you make money if sometimes you are without work for periods of time? That can be very stressful and overwhelming for a person to sit there and look at 4 walls each day. Then you make it to the hospital and tell them that you are depressed and they might just admit you to a place where they feel they can help you.
Keep your head up and stay away from negativity
Overcoming this stigma has been hard because some people who do not have our health issues will never understand the pain and health issues that we go through. They would always think that you are making up excuses and you are just being a big baby. That stuff is very hurtful because we are the ones going through the pain and kidney failure or any health issues. They have okay health maybe but if you do not have my condition, I do not feel that you can express it unless you have a valid degree behind it or if you were a caregiver of a patient with lupus. It can really become bad at times but it's all up to you to keep your head up and stay away from the negativity.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?