Don’t you just love it when someone tells you the lupus is your fault? I woke up today to my dad screaming at me telling me that my lupus was my fault because I didn’t take care of myself. What a hypocrite.
My dads extremely overweight and eats like crap and he has problems with his heart. Although there’s a big difference between his heart problems and mine - mine are cause by my body attack the heart. His is caused by his shitty eating habits… And yet it’s my fault? Hilarious.
Anyway, mybp has been really really low these past two days. This morning it was 90/48 with a pulse of 66. Obviously my mom was concerned so she asked my dad to help… Bad idea.
He screamed at me to drink water and I was tired and cranky and I just wanted to sleep so I snapped back. Then he took away my iPhone and my computer because apparently I “don’t take care of myself”. What bullshit.
I take my medication every day. I don’t do drugs. I’m not obese like him. Yeah I don’t eat great but what teenager does? Still, that gives him NO right to tell me that the lupus is MY fault, like I deserve it or something. And that’s just bullshit. (Sorry for the swear words but I’m really cross at the moment).
I don’t feel good at all and him attacking me this morning was the last thing I needed. I suppose if he tries to not let me go to the doctors office that I will just have to call the police because I WILL NOT get sick and worse for that asshole. I wont.
Sorry, I just needed to vent. If there’s one thing I can’t stand it’s people telling me the disease is all in my head and that I can control it. Can you control your immune system? F no. It’s INVOULNTARY. Meaning you cannot control it. That’s like yelling at someone for breathing or for having a high heart rate. It’s stupid because they can’t control it.
I’m settled on the fact that I am not talking to him until he apologizes and MEANS IT. I did nothing wrong (yes I snapped but I’m tired and I feel like someone ran me over.) plus, yelling at someone whose already sick isn’t going to help them.
Again, sorry I just needed to vent. sigh I suppose he’ll stop being an asshole once my doctors tell him it’s not my fault when I see them later this week. Although I’m pretty sure my moms going to tear his head off for making me this upset and yelling at me when I’m sick…
People don't understand and it is a shame. Because we don't look "sick", they think we make these things up. I am quite a bit older than you BUT my 23 year old daughter has said the same thing to me. It is very upsetting because you feel awful to begin with and then they blame you.
She told me it is because I don't exercise or eat right, meanwhle I was an athlete most of my life and not even overweight. I had to stop playing most of my sports as my disease progressed.
Now , as a parent, I will tell you that your Dad most likely doesn't understand how an autoimmune disease works and sees his child not feeling well and he can't control it. He probably feels helpless to help you so he gets angry. It takes a while for people to understand.
Reassure him on your good days that you are up and about because you are having a "good" day with your Lupus and then on bad days, tell him ,I am having a "bad" day. Eventually he will come around and start to support you.
You know your body the best, so if it is one of those BAD days , you need to do what is right for you. Write things down so you can speak with your doctor about all of your concerns.
Wow, I am so sorry you have this added stress! Both of your parents should be supportive.
Do you have any other close family nearby? The most important thing is how you react to your parents. You have your own power not to let them treat you badly or push your buttons.
I am older but have learned I needed to reach out and widen my support group, as my family also acts inappropriately. Take care of yourself first. How old are you, if you don’t mind me asking. I am a single Mom and oversee the care of my adult child who has many challenges. Our family lives closely but we have had to learn ways to react to their behavior. This has made our lives much more peaceful.
We do not see our family often, but when we do we leave if they say anything inappropriate. Our church has been very supportive, as has our friends who we see regularly.
Please surround yourself with good friends and learn how to detach from toxic ppl. Do you have a lupus support group near you? If not, you can call the LFA and find one.
I am glad you reached out to us. There are many supportive ppl here.
Living with a chronic illness sometimes requires counseling and direction to help you find ways to react to people who do not understand. My daughter has learned how to keep her power and react properly to others. Our quality of life has greatly improved. It is all about consistency and structure.
I am so sorry you are going through this. Please feel free to pm me if you want to talk. I will keep you in my thoughts. ((Hugs))
Oh my i’m sorry, stress does not help! This is certainly not your fault. I’ve had Lupus since I was 13 and am now 33. Speaking from experience I know my mom was scared and over reactive. Your dad is just scared I’m sure and doesn’t know how to help you.I get told a lot I’m lazy so ehen I hear things like that I start giving literature to people, small fact sheets, emails. This seems to help and minimize comments like this. Hang in there
So sorry this happened Teen. I agree with all the above. Just wanted to send you a (hug). You have been so supportive of others and you deserve the same. I hope you Dad finds his way through this and learns to support you.
I agree with what Flower said! There has been shown a mind/body connection. I believe all of my autoimmune diseases started after I was under incredible stress for many years and there was a situation that was terrifying and lasts till this day. My autoimmune diseases (5) and hbp started during that time. Is it my fault? No, my immune system is trying to do what it's supposed to do, it just doesn't understand that what it's doing is wrong. Can I change it? The only thing I have found is taking stress out of my life and taking all the meds which seems to keep the diseases in check most of the time. I don't know how old you are, but if your dad is a constant and incredible stress in your life and you are old enough, you might think about moving out. It would be hard, but there are lots of programs for low income people that would help.
Meanwhile, I am glad you reached out! Take care...
OMGosh... I'm giving you a cyber-hug... no one should have to deal with a situation like yours.
The only advice I can give.... as a parent of five, the only time I have "over-reacted" to my children is out of fear. Your Dad is scared of losing you and is in denial too. In his mind, if you would just take care of yourself, IT (being Lupus) would go away.
This does not make his behavior OK on any level, it simply makes it more understandable. I hope your doctor visit helps him to see things as they truly are.
Not to take sides, but he should really be concerned and listen to your docs. Most autoimmune conditions are inherited, in that although a parent or grandparent may not have Lupus, it is very likely that they had or will have an autoimmune condition. My doctors tell me all the time that it is genetic. I joke with my mother about it all the time and she tells me that it is the bad gene pool on my dad's side of the family. Every time my children get sick with any acute illness, I make sure I remind the pediatrician of my history, because I want to be proactive. I have had so much guilt when I think about what I could have unintentionally exposed my children to, by way of sharing DNA with them. It sounds like your mom is really supportive to you. I am glad that you have her. It hurts so badly when the people closest to us don't understand! Another thing that most people don't understand about autoimmune conditions is that there typically is a trigger that brings on onset. If we knew what that trigger was going to be, don't they think we certainly would avoid it, because who wants to be sick. I wouldn't wish Lupus on my very worst enemy and if all illness came about as a result of behavior, there would be a lot more sick people in the world. Take care Teenlupus 101! I hope things get better for you! <3