In real life I've never talked about emotion and feeling because I think it'll become so drama and I hate it, but here I want to explain a little. I'm a 24 yo woman, had lupus since I was 14. My life was okay back than, but after I got lupus, there were changes. First, of course I have to get medications everyday. Okay that's not good but I could tolerate that. Second, my lupus is attacking mostly my hair, I have hair loss and it stressed me out. This one bothers me a lot, but in this post I want to talk about the other important thing, relationship. Since I knew I had this, I never talked about it to my best friends, and I took distance from my friends. I mean, I'm still good friends, but I just don't tell everything about lupus to them.
Why? Because I knew it first when I was 14 and at that time my friends maybe had no clues about what is it. So, I don't want them to overthink this as cancer or anything because it's hard to explain this disease to other people. So, until now, none of my friends knew about this, and sometimes it's hard to hang out with them since I feel like hiding something. I knew they are all good, but I just want others to look at me as a normal person. If I tell them, I couldn't be normal. Since this one is an autoimmune disease, people sometimes will connect this to leukemia, even though it's different.
So, I don't want to be dramatic, but this disease lower my self esteem too. My face look fat and I'm having hair loss. I've read all the self help motivation and I understand how to get more self esteem technically. But it is so much harder than just reading on the book.
I just want to know, anyone who had lupus, how could you handle this? Please let me know your experience maybe it could help me.
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Babymilo
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Before my flair up I had beautiful long thick hair, often complimented and admired. Sadly I suffered some hair loss and thinning so I had to chop it short, I was terrified to do so! I have to say I really like how it has now turned out and my friends and family have been very supportive.
I know lupus is complicated and some people get the wrong idea. You should try to talk to your friends though! I was worried that people would start treating me like I was made of glass or something but nope only become more supportive! They should be there for you if they are good friends I am sure you are lovely and they enjoy hanging out with you, it should not change the relationship if you need to talk about how lupus is making you feel, a bit like if one of your friends had say depression, you would not want them bottling it all up.
The main thing to do is be positive and treat yourself now and then! Maybe do your makeup all fancy or have a relaxing bubble bath. The drugs often cause a bit of "moon face" I have noticed it start happening with me, it is a sad side effect. But it's important to try to like yourself Maybe do a facial peel now and then?
Thanks for the reply. After reading all these replies I feel better because actually there are so many people experiencing the same battle like me. I hope someday they will find a specific drugs for lupus that will heal us. Bubble bath is a good idea LOL.
Glad you found our forum...it's wonderful: everyone here totally understands how you're feeling, and everyone here enjoys a good laugh...so if you're having a hard time with family & friends around you: come tell us about it, cause we get it 👍
I have infant onset lupus and am now 63...so I am v much feeling for you: I know lupus is tough on friendships.
Over my many decades of lupus, I've found one of the best ways to help family, friends, colleagues & whoever to understand what I'm living with is to give them one of the great Lupus Uk leaflets to read...so here is a link to the website's online bookstore where you can order booklets & a really good dvd too:
Hi Babymilo & welcome to this site - it really is helpful.
I wasn't diagnosed with Lupus till I was about 35 (I'm now 53) - it must've been tough being diagnosed so young. I can understand you not wanting to talk about it too much to your pals back then - at that age we don't want to be "different", we just want to be like everyone else. You're all older now, however, so perhaps it would be a good idea to sit down with a couple of your closest friends & explain the illness to them and how it affects your day to day life. The leaflets that Barnclown suggested are very helpful & may help you to explain SLE to them.
It won't make any difference to true friends - tell them you don't want to be treated any differently, that you just want them to get a better understanding of how Lupus affects you. My close friends & family know as much as they need to about my illnesses and how I'm affected by them. They are now better placed to help me when I need it & rally round when I'm in a bad flare up. Sometimes if I'm just a bit low, am isolating myself & have a dose of the "poor little old me's" they give me a metaphorical kick up the backside to get myself up & out and into some company. A very good friend, who probably knows me better than I know myself, will sometimes say "well, just HOW ill are you" ?!?! I've learnt to laugh at myself over the years.
Fortunately, I haven't suffered hair loss so far. I do have a very round, "moon" face though & my weight has gone up dramatically. Although I'm not happy with this & am a bit self-conscious, I know this is the price I have to pay for being on the medication that keeps me as well as possible (at least from being seriously ill). Perhaps it's something that's come with age or with living with Lupus for so long, but I accept myself as I am these days - warts n all !! If anyone else can't accept me the way I am, then they're not a friend & I don't need them in my life.
As others have said, be good & kind to yourself - just as you would if it was a friend who had this disease. And, yes, learn to like yourself. I'm not quite ready to say I love myself, but I'm not averse to looking in the mirror, giving myself a wink & saying "you're not such a bad lass Carolyn" !!
Thanks for your reply. It's a very calming. I think I need to learn a lot from this disease, how to handle this physically and emotionally. Thanks for giving me advice. I feel a lot of better after I found out that actually there are many people having the same battle like me. Because sometimes I just look at my surrounding people seem so happy and Im mad because of "Why I got this? Why not other people?"
Thank you for giving understanding answers. I will update my progress here.
Firstly, I would like to commend you on your bravery for writing this post; I am sure there are other people who feel the same way, and will benefit from the replies you receive as this may relate to their own experience.
Have you considered asking your GP for a referral to counselling? Some people find this a helpful way to work through things and improve their confidence and self-esteem. If you need more information about support services that are available, we have a leaflet about lupus and depression at lupusuk.org.uk/lupus-and-de...
Sharing your emotions with trusted people and thinking positively about yourself can help manage stress levels and reduce triggers for lupus flares. Last December, we posted a blog on ‘Stress Management and Relaxation’ which you may like to read here: lupusuk.org.uk/stress-manag...
Lupus can have a significant impact on a relationship whether it is with family members, friends or your partner. Last month we posted an article on ‘Lupus & Relationships’ which I hope will be of help to you: lupusuk.org.uk/lupus-and-re...
If you would like more information about hair loss and tips for coping with it, you may want to have a look at our blog article on the topic at lupusuk.org.uk/coping-with-...
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I am sure you are lovely and they enjoy hanging out with you, it should not change the relationship if you need to talk about how lupus is making you feel, a bit like if one of your friends had say depression, you would not want them bottling it all up.
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