how to explain lupus to others

[imkeener]

Hi all, I'm new here and just diagnosed with lupus for 6 months (though I suffer lupus symptoms for a long time). The disease is really harsh. It not only makes me exhausted, but it also has impact on my relationships. No one at my office can understand clearly what i'm sufferring. Because of fatigue, joint pain and headaches, I can't join parties or pinics with my colleagues. These symptoms have recently affected my job efficiencies. They assume that I'm lazy and not open with others. But, you also know that, lupus symptoms come and go unpredictably. What should I do now? How can I explain my condition to them ? And should I continue to work with lupus??????? I greatly appreciate your help

[Penguintaz]

Hi Imkeener

Does your boss/ colleagues know you have Lupus? Telling them is step one. There is booklets from Lupus UK explaining about the disease.

The way I explain it (as I have been having a few interviews for jobs) is by saying it is an auto immune condition, it can affect things like my energy and joints. If it gets bad it can start affecting organs but I am currently on treatment and have been in remission (under control and healthy-ish) for a year. If you do get a bit tired or sore at work you may need to take a little break or go a bit slower through your work. Your boss can't fire you just because of lupus, as long as your quality of work is still good.

The real question is, is your work too much for you? If you are currently going through or recovering from a flair it is recommended to take time off to properly recover, talk to your boss about maybe working less hours. If you are really struggling you may need to look at part time work or maybe not working for a bit.

I hope you are able to feel better soon XX

[imkeener in reply to Penguintaz]

Thank you so much- Penguintaz

I'm working at customer service department. This job sometimes drains of my energy. My boss and colleagues know I have lupus, but they don't understand what I'm going through clearly.

[Chanpreet_Walia LUPUS UK]

Hi imkeener,

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

We published a video on 'explaining lupus' to family and friends which you can watch here lupusuk.org.uk/family-and-f... . We also published a blog article about 'employment and lupus' which has a section about telling employers and colleagues about your lupus - lupusuk.org.uk/lupus-and-work/ (the article has links at the bottom of the page to our booklets on employment with lupus)

Below, I have included some information links which I hope you will find useful:

Managing fatigue: lupusuk.org.uk/managing-fat...

Joints/muscles: lupusuk.org.uk/wp-content/u...

Pain management: lupusuk.org.uk/pain-managem...

Headaches: lupusuk.org.uk/headaches-an...

Please keep us updated, wishing you all the best.

[imkeener in reply to Chanpreet_Walia]

Many thanks, Chanpreet_Walia. Thanks for your helpful links

[AllyGrace]

hey there! i, too, used to struggle with how to explain what i thought everyone just 'knew'... then i found a lovely story, The Spoon Theory, written

by Christine Miserandino. her website is 'but you dont look sick' - lol

not sure if this will work, but i will try to attach a .pdf of it. if it doesn't, i REALLY want to encourage you to visit her site and read it -- it's pretty perfect!

be well -- and hang in there... you'll be in my thoughts!

xoxo,

allyson

REVISED: i was unable to upload the .pdf on here, so please visit

butyoudontlooksick.com/arti...

[Jennifer251]

hi, imkeener

sorry to hear your story and I understand how your feeling is. I met difficulties in explaining the disease to others, even my husband. They didn't understand what I went through and just thought that I'm lazy and try to show my weakness. But, everything is okay now. Hope my experience is useful for you

- Explain specifically your lupus symptoms to your colleagues. You're suffering from joint pain, talk specifically about it. Describe where your pain is located and tell how it impacts you. For example, "I suffer from joint pain, it’s a sharp pain and swollen sensation in my joints. Whenever I move, a sharp sensation appears in the joints" or "I’m extremely tired every morning. When I try to stand up and move around my room, the stiffness causes more pain and I feel like I frozen in a place. It’s terrible but I still try to get out of the bed slowly". Talk clearly what you're going through to help them undertsand.

- Describe your fatigue. Many people without a chronic disease can’t understand how fatigue actually is. They only use the word in daily conversation to implicate that they’re very tired. So, try to explain fatigue in a way they can image. You can tell, for instance, "my fatigue is exhausted feeling after excessive exercise. Have you ever felt too hard while working out? You only want to come back home fast and lie on your bed. My fatigue is something like that. There’re some days my muscles ache when I wake up, it looks like feelings when you overdo exercise. I sometimes can’t go to the bathroom to wash my face” or "I want to go to the supermarket, but all things I can do are to get dressed and lie on the couch. That’s fatigue”.

- Seek support. Telling them your disease also gives you a chance to seek support from them

- Relieve lupus symptoms and prevent flare ups. You should change lifestyle habits and pay more attention to your healthy diet.

+ Reduce stress

+ Sleep enough and take more rest

+ Get aqua therapy or mild exercises

+ Eat more omega 3s and vitamin foods, vegetables and fresh fruits

+ Avoid fast foods and processed foods

+ Take supplements. If you don't consume enough essential nutrients, ask your rheumatologist for vitamin D3 or B12 complex supplement. For me, I've been taking Lupufree supplement, it seems to work well for me.

+ Avoid sun exposure

These tips help improve my lupus symptoms more. Hope they're also useful for you. Best wishes to you

[imkeener in reply to Jennifer251]

Greatly appriciate your reply. While I'm worrying about how to explain the disease to others, your tips help and encourgane me more. I also try to change my lifestyle, eat more good diets and think about supplements. Hope these boost my energy and prevent flare ups. Besides, my concern is should I keep working? The current job drain of my energy, it sometimes triggers my stress

[Jennifer251 in reply to imkeener]

if your job puts you more under pressure, think about part- time job. You may ask your boss for working less hour. Or seek another job that is fit your health condition