I was diagnosed with Systemic Lupus when I was 24 years old, but I was suffering with symptoms long before then. Most days I feel great. Most days I am full of life and my brain can thinks a million thoughts a minute. Sadly, every now and again I have a day when lupus decides to come and bother me. Here are a few things that I have learned from living with Lupus.

Plan Ahead

Sometimes when my Lupus acts up it is hard to complete my normal daily tasks.  Before I was diagnosed with lupus, I had a friend who had Lupus.  She told me that she would get her hair braided, so that if she ever had inflammation in her hand she would not have to worry about it when going to the hospital.  It seems like a small thing but trust me… small things make a big difference.  Although I didn’t have lupus at the time I always remembered that.  Sadly, she is no longer with us.  I always keep her words of advice with me though.  I never knew I was going to need them.

When my Lupus is flaring up I normally keep a hospital bag by my door so that if anyone has to take me to the hospital they won’t forget to bring along my favorite things. I try to pay my rent up in advance so that if I am ever in the hospital for an extended period of time I will know that I don’t have to worry about bills too much.

Try No To Lash Out

When I am sick I am mean.  It’s partly because of pain, but a big part of it is that I like to do things on my own without help. If I need someone’s help and they do it wrong I get mad.  I know that sounds ungrateful, but it is hard to accept help when you are always the one helping others.  Try not to say anything mean that you will regret later because those words stick with people.

…But You Don’t Look Sick

This is just people’s ignorance.  People think that saying that “You don’t look sick” is a compliment.  It doesn’t feel much like a compliment when you are being denied help because no one takes your illness seriously.  I was a person who suffered for many years and people would think that I just liked to complain.  I would be very ill, but because no one saw a physical difference, they assumed that I was well.  People are not meaning to offend you when they say this.  I think they are trying to find a way to act like they are looking on the bright side.

Change Your Outlook

When I was first diagnosed I use to go to all of the walks and all of the support group meetings and everything.  I was so interested in learning about how to help others and myself.  That changed suddenly when I realized that everyone wanted to have a pity party. You may have some hard times but you will make it worse if all you do is complain.  No one wants to hear you constantly complaining.  If you put yourself in an uplifting atmosphere and you have an uplifting mood, it will help you feel better.

Change Unhealthy Ways

Medicine is good, but you may find that you need less medicine if you change unhealthy ways.  Im not going to sit here and tell you to go on this diet or that diet.  What you do with your body is your business.  What I will say is that if your body is already under stress try not to add any more. I am in remission now, but I got called out the other day by a loved one for drinking coffee.  I’m not supposed to drink coffee (so clearly I’m not perfect with it.) I do try to listen to my body though.  If I start to feel bad then I will leave whatever it is alone.  Start to listen to your body.  I actually don’t like to take medicine because medicine will numb you and you won’t be able to feel your bodies’ changes.

Tell People What To Do In Case Of Emergency

Let them know your symptoms.  Let them know what to lookout for.  I suffer from cognitive dysfunction sometimes and it’s hard for me to think.  Knowing this I let people who will be around me know what to look out for BEFORE something happens.

Don’t Be Embarrassed

I’m telling you not to be, but I am.  I don’t like it when people are angry with me because of things I can’t do and places I can’t go.  I’m allergic to the sun because of my condition.  I’m not supposed to be going to many outdoor events.  I am embarrassed to say that I can’t go, and sometimes people become angry about it.  There are times when I will go and just know that I will pay for it later.  I just don’t like not being able to do whatever I want. 

I shouldn’t be embarrassed about it though. These days I try to surround myself with people who understand.  My whole friend circle would know how to take care of me if something were ever to happen, and they do not make me feel bad if I can’t do something.  I really don’t have a reason to be embarrassed and neither do you.

The moral of the story is that if you are suffering from Lupus or any other chronic illness you will be ok.  Things get tough at times, but it’s nothing that you can’t get through