LUPUS UK

Do you have any suggestions for a future 'Topic of the Month' article?

Do you have any suggestions for a future 'Topic of the Month' article?

There are loads of blog articles on the LUPUS UK website with information and advice covering various aspects of living with lupus. You can check them all out at lupusuk.org.uk/category/blog/

Are there any areas you would like us to cover in a future 'Topic of the Month' article? Please let us know in the comments.

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Hi Paul and happy New Year to you.

I’m thinking that it might be useful to use the Topic of the Month to create “social stories” for people (including doctors, nurses and medical students) who can’t grasp what they can’t see i.e the Seeing-is-Believing brigade: autism.org.uk/about/strateg...

I have to declare an interest here.. (aspect of my proposed PhD) and it may already have been done of course. But also my eldest son has Asperger’s Syndrome and occasionally asks how long before my illness will kill me or if I’m actually just a hypochondriac? I’m not saying that most of the non autoimmune population are on the autistic spectrum of course - but maybe it could help to explain a chronic illness to them as if they were? I have a tendency to assume people will naturally grasp things when often they just don’t!

So how about inviting people to give examples of how they have managed to effectively convey to doctors, family, friends and colleagues how a Lupus flare actually feels to them?

It might be very useful to have examples which appear to worked particularly well like short, personalised versions of the Spoon Theory - where a few sentences of explanation have made a person’s whole expression visibly change - eye openers if you like for a person who previously didn’t “get it” at all.

I only suggest this as a topic because I experienced this for myself today with an old friend!

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Hi Twitchytoes,

Thank you so much for this suggestion. We certainly hear from people who have difficulty explaining lupus to their friends, family and colleagues often and so good examples of how other people have achieved this could be popular.

We have tried to cover parts of this in our blog articles about relationships and working, but a dedicated article for it is a good idea.

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Thanks Paul. I’m aware that you’ve touched on this already in certain topics. However, as I think you are suggesting, it might be really helpful if we could refine it down to a few personalised sentences that each of us could use to convey the impact that living with autoimmunity has on our everyday lives.

For example I benefited enormously from a comment you made re PIP and being able to do something safely, reliably and repeatedly (I think these were the three that the DWP conceded to?). By explaining this to me you helped changed my mindset about appealing PIP.

I now find myself making a conscious effort to flag up symptoms in a way that makes more of a direct impact on my friends, family and doctors. It can make a huge difference looking someone in the eye and finding the right words to hit home without boring them or risking being thought a hypochondriac.

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Hi Paul.

I don’t know if it’s been talked about before but I would like to know how people cope with lots of different autoimmune problems my main diagnosis is for Lupus. During the lat few years I have also been diagnosed with diabetes, Sjögren’s syndrome, asthma, fibromyalgia, to name a few. I would like to know if there many with multiple diagnoses. It’s difficult to know how to treat the symptom when I and doctors don’t know which one is most prominent. Thanks 😘

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Hi CRYSTAL11,

Thank you for contributing. It is unfortunately very difficult sometimes to discern the cause of particular symptoms when you have overlapping diagnoses - sometimes it may not be possible. I'm afraid that we wouldn't be able to come up with a lot of productive tips on this to produce an article. All I can really advise is that you read and get as well-informed about your conditions as possible and maybe keep a diary of symptoms to try and identify and trends.

We could cover some of the additional symptoms that can occur due to these overlapping conditions, such as dry eyes and mouth commonly with Sjogren's. Are there any other symptoms like this that you feel we haven't covered yet?

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Hi Crystal 11

I know exactly how you feel, as I also have more than my share of different autoimmune problems, however I find difficult to know if I am having a flare or coming down with an infection like flu even though I have had lupus for almost 30 years. In fact I had thought that I was going through a flare but it turned out to be the menopause, which I had no real problems with unlike other women.

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So know what you mean. It gets more and more difficult to know what is going on in there. I have had the Lupus all my life. But mix it up with all the other stuff going on and it’s a nightmare. The biggest problem I have that there isn’t one specialist I can talk to about the whole lot. They all have there own little field bu when it comes to a mix then it’s lots of different advice. There was the time I had a Addison’s crisis and was on pregnisolone to stop the crises (on 20mg per day )when the Addison’s consultant told me just to stop them as the crisis was over. He had no idea what that would do to the Lupus. I was in Hospital at the time so it took me a while to get him to understand. Oh the joys of it all

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I agree with Twitchy and CRYSTAL's suggestions. Explaining or coping with " the invisible" for the many of us who can look very well, but the symptoms and pain can't be seen.

One thing about the spoons theory, I'm afraid, is that it's used out of context very often since it has become well known. I've heard and read people say they don't have enough spoons for something. I know they are perfectly well physically and mentally, but use it as shorthand for "can't be bothered today". Infuriating. I'm afraid I explained the difference rather briskly to a young friend but she took it well.

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Yes I agree about spoon theory having become a bit of an eye roller and it’s also a bit long winded. I was just thinking of a couple of personalised sentences that have worked well for people here in the past.

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The dryness all over my body is one of the worst things I contend with. It affects all my body from lungs to vaginal from nose to ears. Every part of my body is dry. It’s so confusing when there are so many different symptoms some are one thing some another. It can drive me mad to attribute a symptom to one or the other. Or does it just not matter xx I have so many questions but not many answers at the moment I will keep reading x

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Hi Paul_Howard a good guide to benefits and claiming would be useful for people ... such as info that Lupus UK members can access the "benefits and work" guides. That the forms/ assessments should take into account fatigue, pain, needing to pace activities Also whether you can actually "do" the things they ask as you should count that you can not do them if you can't do them repeatedly / reliably / safely / to an "acceptable" standard (eg walking in severe pain should not count as "acceptable" / being able to mobilize

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Thank you for your suggestion fabwheelie. We did try to point people towards the available assistance and guides for claiming benefits in our previous blog article about finances - lupusuk.org.uk/managing-fin...

I agree that this is a very important topic for a lot of people, although I do wonder how well I can do it service compared to some of the literature already available. I will certainly mull over how I could make this work. Thank you.

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