Dealing with an invisible and fluctuating il... - Vasculitis UK

Vasculitis UK

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Dealing with an invisible and fluctuating illness


I just blogged about this, which others here may be able to relate to. I've been living with a very neurological form of vasculitis since 1994, and wanted to write a bit more about how others can misunderstand things.


8 Replies

HURRAH! Brilliant article! My infant onset lupus is well medicated but still “moderately” active and features neuro cerebral manifestations (+ small vessel vasculitis). I am 65, managed 2 university degrees and a career under extremely tough circumstances, and am TOTALLY relating to every word you’ve written. Am sharing your article with my family & friends now. THANK YOU viv!

A really good blog Viv - so is the one about coping with a relapse. Hopefully they will help people understand your illness more. My vasculitis is different to yours but I completely understand where you are coming from.

Excellent blog Viv. Very well written. As a fellow sufferer, I can relate so much to what you have said. Hope it’s okay to share?

vivdunstanAdministrator in reply to LMB2

Sure, yes, please do. I'm trying to spread awareness.


Thanks all for the lovely comments 🙂 Much appreciated.

This was truly inspiring to read. Thank you for sharing your story.

A very interesting account and very relatable. Like you and others with unseen diseases I’m constantly getting,you look well, and when people ask how you are doing, I say I’m fine, because it’s just easier and you know people don’t really want to know. Although I have GPA, my life has been ripped apart and although I’ve made significant progress since being first diagnosed in 2016, I am still left with nerve damage in my feet, which feels like I’m walking on a 1000 needles. I have dreadful joint pain making getting out and about very difficult, so often choose not to, as just easier. But like the original post I look fine except for the steroid bloat it’s just inside me that things are going wild, the jelly legs, the trembling in my body if I do too much, the brain fog means I have difficulty reading, a one time passion, and I had to give up my masters; the university were not prepared to allow me time! The insomnia, the fatigue and feelings of utter uselessness and of being a burden. Having a long term illness is a fairly lonely place in society, if you are not able to work, my work got rid of me so not my choice, you are treated as a scrounger, a drain constantly having to justify yourself. So while it’s obviously important to tackle the disease when it’s highly active and most dangerous to life, it’s also the long term affects on your life which are least talked about, so thank you for this.

Excellent blog ,and so very true, I try not to let it bother me but to have people say you look well when really I feel lousy ,does rankle a bit. Vasculitis in whatever form sounds as if it’s on a par with tonsillitis ,people have no idea,

I have U V , but I no longer mention the Urticaria word,as the first response I get is almost certainly “ oh I have that ,especially when it’s hot “ .

It never really goes away this dreaded disease , it’s a day to day living, carry on blogging!! It was very interesting reading. 🤓

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