Things You Need From Family and Friends For Support

People often don’t understand how a person with lupus (or any autoimmune disease) could need different kinds of support from loved ones. A prime example, I needed the medication for my kidneys and lupus when I suffered my first kidney failure. I was denied by Medicaid and everything.

Bills piled up as the medication was getting filled - but how could I afford it? I lost my job due to being in the hospital for 2 months, and I had no money coming in. So, bills continued to pile up while I was in the hospital.

But my family came through for me. I was going through my healing process and my mother made sure that I ended up getting what I needed.

Showing up for me

My older sisters made sure they were there for any support I needed. They would call at least two times a day. Even when they said they would call me back and couldn't, they made sure they called me the next day.

I don’t like to be treated differently, but I still want the support to show up in some way.

It is all about the great vibes and love while you're in the hospital or going through a hard time. Who really shows up and shows out. Who calls and texts you while you were going there, while you were in there and when you got out. I had family calling the hospital room when I was sick. I had people bringing things and people I never met show up and that made me feel great.

I just needed the company from my family and friends - and not just for one day. Even the smallest things help.

Social support

We don’t have a lot of friends dealing with this disease and I wish I could find lupus friends in our area that understand my condition. When we make plans they would understand when we suddenly can't make it, because we are all going through the same thing. They won't get mad.

I am very much a social bug when it comes to me feeling well and wanting to go out. I want to feel involved. Please ask me if I want to go. I really want to make weddings and baby showers and friend events. I don’t want be left out and put to the side.

I don’t like to feel like a burden, but if you see I need help then help me. Most likely that’s how I will get to the event or be able to keep my word. It's not necessarily looking for rides, it's sometimes helping me get into my car and then get out of my car. I just need a little push sometimes.

Encouragement

Encouragement has been a big part of the support I need, especially when experiencing mental problems during my worst lupus flares. Some people aren't comfortable sharing, but this disease makes you depressed. Before I had children I was literally thinking I was going to die going through the kidney failure. Now that I have children I have so much more to live for, but having those supporting family and friends also helped me get through that time.

And sometimes we as individuals can reach out to those who matter the most to us as well.