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Can't stand people

I was talking to one of my mums friend on Saturday. I said to her that my teacher thinks i should train to be a social worker. I said i wouldn't be able to handle the 5 years of education anyway.

My mums friend was like no you can not do that to much on your feet.

Later on she is saying you can live a normal life apart from flare ups.

I was just thinking shut up will ya. How is it normal when i am 16 years old and can not bend down using my knees. I can not wash and dry my own hair. Have to have help in and out of the bath. Can't do shirt buttons up can not go shoe laces up. Walking to the closest bus tries my feet out.

I doubt that is a normal life. Everyday i feel pain. There is not a single day when i am not having pain in my hands or feet. When she was 16 she could do all the stuff above. I thought just shut up because she knows nothing. She thinks because she knows someone else with lupus that she is a flipping expert. Lupus effects everyone different.

5 Replies

You are right. People don't understand what each of us going through. One friend said to me you need have another baby and you will be fine!!!! Really? How stupid that comment is? I just stop telling people about my health issues.


The line people say which I Hate is

"Just get on with it "


You sound so frustrated and rightly so! Being 16 years old and feeling so restricted by pain much be truly awful. I first started getting symptoms around the same age and unfortunately it is only now in my mid 30s that I have a diagnosis. I had to sit back and watch everyone else get on with their "normal" life while I was really struggling. I do empathise.

I think that it is brilliant that you feel able to vent your feelings in this forum. A lot of people talk about acceptance of having a chronic illness. But not everyone is the same and, in my opinion it's OK to be not OK with having a chronic condition. It's OK to be angry and frustrated sometimes. It means we're human. It's especially unhelpful when people with no clue give their not so helpful advice.

Vent away, have a rant and express how you feel. It's healthy and can be healing. You are amongst friends.



People often really don't get it, sometimes I try to explain, other times I let them continue in ignorance.

Then out of the blue you will meet someone who does listen, and can see what you are coping with!

We're a funny lot us humans!

I think you may be getting a double whammy here, not only do people like to tell lupus sufferers what's best for them, they also like to judge and criticise young people.

Don't you have any of it!

Surround yourself with people who are good for you, and give the rest the cold shoulder.

Good luck, what ever you chose to do.


It's amazing how many untrained experts are out there. If you feel like you can do something do it. I learned that lesson when my dyslexic niece trained to be an English teacher.


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