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I Am Home Because Of Disability And Family Thinks Because I’m Home I Should Take Care Of My Mom, Drs Appointments, Shopping Etc...

A MyLupusTeam Member asked a question 💭
Jackson, NJ

Siblings live close or are retired. When I complain I’m called a failure. Anyone have similar problems, and how do you handle it ?

April 6, 2018
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A MyLupusTeam Member

HI yes.
I mean in a way. I am also now on disability and my mom keeps asking when am I going back to work. she feels that I have had more of a vacation. What is painful to me is that my hip hurt, my hands are swollen, I have had a flair up in my eyes and I feel like if she asks how am I and I just say fine she becomes pushy again - when are you going back to work. So I hate this - but I make sure to tell her - my hands are swollen, my migraines are horrible I don't sleep etc.
It is difficult when people don't really understand the pain, exhaustion and frustration!

January 22, 2019
A MyLupusTeam Member

Yes I do! I'm disabled and I deal with lupus..fibromyalgia.CHF..Raynauds..arthritis..hypertension..anxiety..depression and more. I have pain daily. My nerves are shot. Need a third valve replacement right now. But I have to make sure I get my mother to her doctors appointments. Shopping and anything else she needs to do. There are days when I tell family I'm not well and I can't do it. So they find a way to get my mom where she needs to go..but it's mostly me. And here's the kicker! Not just because she's my mother but because she and my dad gave me this car. May he rest in peace. That shouldn't have anything to do with it..I'm not well to keep up with my..my sons and her appointments..shopping etc. Theres even been a lot of unnecessary arguments because I'm being treated like a child. So this is so stressful for me. I truly understand. My sister works like crazy so she doesn't get the stress I'm under. I wish better for you. Take care!

January 15, 2019
A MyLupusTeam Member

I think one of the best ways of making relatives aware of your condition is taking each or a couple at a time on a trip to your doctors appointment with you SO THEY CAN HEAR IT FROM THE HORSES MOUTH! Then see if they'll still be in denial. If so, its them still with the issues, not you.

November 5, 2019
A MyLupusTeam Member

It gets very lonely not being understood or respected because I'm unable to be proactive in the world . Having severe health issues changed how my family looked at me

October 28, 2019
A MyLupusTeam Member

Ladym its hard not complaining but we have to tell the truth about how we are physically feeling or they will think " fine" means that I'm okay..not hurting anywhere..can take you anywhere and be out all day with a smile on my face. Just got your disability..what makes her think your well if you can't work? My mother has lupus also but not other illnesses that I have. Maybe you can fill your mother in on how lupus effects you..in depth. In my opinion of course. Best to you. Take care and get rest. Stay positive. Praying!

February 11, 2019

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