Just cause you can't see my illness

I feel as if people do not believe Me. I feel like just because they cannot see my illness they do not want to acknowledge it.

If someone had a broken arm they would not have constantly keep harassing them . Just because you cannot see my illness does not mean it is not there . I have decided that if I am confronted about my blazer again I will argue you back . I have gotten to the point where I do not care what happens . I may only have 5 months max left at my school but I do not want to have 5 months of constant battling .

5 Replies

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  • Hi LouLamb, it's so sad to hear about your situation. I would love to say the battles get easier with adulthood, and not to paint a bleak picture of the future. But I imagine you've read some of the other posts on here where we adult "lupies" continue to struggle with other people's lack of knowledge about our condition, whether it's our work colleagues, strangers, even our own families and the doctors who treat us.

    But it ain't all bad. I'm sure others on here will tell you, you can still be happy with lupus. I think you are sensible enough to find your own way to deal with life with lupus. I would just suggest that when you argue back, you approach it by recognising it's not their fault they don't understand what lupus is, and see it as an opportunity to educate them.

    And as I put in a previous reply, when people realise what you're going through, you will find that some will see you as an inspiration.

    If you can do something good - no matter how small - out of something bad then you are a good person. And this world needs good people.

    Us old gits on here are hoping you kids go on to bigger things. Like finding a cure for horrible things in the world like lupus, so the world becomes a better place.

  • This goes on with any illness you can't see I think it is really cruel that people don't believe you. My 20 year old daughter said to me she knows what it is like to be in pain but for you mum it is 100% worse witch I think was a nice thing for her to say

  • Lupus doesn't just affect u physically it affects u mentally like emotionally as well

  • I know it affects you mentally and emotionally ask your GP for a referral to a counsellor to it is better to have someone who can under stand how you are feeling. I am waiting see a psychologist because I get depressed. I have read about a lot of people who are in the same situation as you from different groups and I think it is shocking how people are treated take care

  • Does your school have a support department that you could talk to. Many schools support departments deal with a wide variety of issues not just learning, ranging from health to phobias. They should be in a position to listen to you and liaise with the rest of the school. It very much depends on the leadership team in each school on how much notice they give to a support department, and with so many becoming academies priorities are changing. Can your rheumy refer you to any organisations who could help mediate on your behalf, to help school recognise what you are going through, have you tried your tutor and head of year as they are responsible for pastoral care, take leaflets and information to them. it may be that you have tried all this and drawn a blank, I do hope you can find a sympathetic ear.

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