Newbie

[skj92]

Hi, Im new here. I got diagnosed with lupus at 14, and have been dealing with it for the past 13 years. I get the symptoms of rash, joint pain, some kidney issues and fatigue. I have recently told my husband and i feel like he's struggling to understand. Any one know how i can help him understand without causing him any distress? Any help welcome please

[Penguintaz]

Hi Skj92

Welcome to our group! Lupus UK has some free and helpful booklets.

Disscussing long term illness can be distressing but tell him how it affects you day to day. As sad as it can be being honest is impirtant. I think what can be really helpful is if he could come with you to you rheumatologist appointment or whomever is overseeing your care.

What is hard for a lot of people to understand is there is nothing to blame for what happens with us, it cause some anger to be thrown our way, just be calm and be prepared to answer any of his questions.

Hope it helps! X

[PuddleDuck1206]

Take him to an appointment with you and get him to ask questionsto your doctor, thats what i did with my partner.

[Krazykat26]

Hi and welcome skj

Have u heard of the spoon theory by Christina someone? Sorry can't recall her surname 🤔!! If u Google spoon theory you'll find it easy enough..I showed this to my family n it really helped them to understand what it's like living with lupus..simple explanations!! I also have a dear friend with MS so I sent it to her to see what she thought n she related to it as well..now we talk about how many spoons we've got n it's far better than trying to explain about how we actually feel!! This probably doesn't make much sense but do have a look at it..it may help!! Xx

[Chanpreet_Walia LUPUS UK]

Hi skj92,

Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

We published a blog article on lupus and relationships, you may find this article helpful in explaining your lupus to your husband - lupusuk.org.uk/lupus-and-re...

Also, you may find it helpful to watch our video on explaining your lupus to others at lupusuk.org.uk/family-and-f....

As KrazyKat26 has mentioned, you may like to watch the Spoon Theory video by Christine Miserandino at youtube.com/watch?v=jn5IBsm...(Not working as expected?)

Best wishes!