Lipodystrophy

Hi, so nice to see a site like this. I've looked for supportive groups before on my condition but haven't found many :( I have SLE which has brought on Lupus Panniculitis and Lipodystrophy when I have a flare up. They all work in conjunction with one another. Basically subcutaneous fat cells become inflamed with the Panniculitis, then Lipodystrophy takes place, killing them off completely. My face and body have been left disfigured and my whole days thoughts are taken up by how I look. It affects me when I'm out and around people.. and has just completely changed me as a person. It's also affecting my relationship. I just don't feel like myself anymore, It's completely taken over my life :(

I just wondered if anybody else had Lipodystrophy/Lipoatrophy?

Has anyone ever got any help with dealing with the way they looked?

P.S - sorry, just left my profile as it was :)

6 Replies

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  • Hi there I completely understand what u mean when u say your condition has completely taken over your life. I don't have the same condition as you but have been going through long term treatment for quite a while now. When u are constantly having appearance changing surgery it can make you really focused on how you look to the point where it comsumes you which isn't healthy. I had to make a really conscious decision to remember how to see myself as more than my appearance to focus on and work on my hobbies, skills and studies. Easier said than done I know! But now I see my appearance as only one small part of me and therefore my treatment is only a small part of my life. I haven't had any other help as such but I do recommend talking to someone at changing faces I know ppl who have really benefitted from it, if you ring up they provide one to one support which can be useful.

  • Thank you for replying. Yes it is so hard. I just feel like I have no control over it all at the moment. i can have surgery on my face to try and make my appearance more "normal looking".. which you'd think I'd be pleased about.. but I then just start worrying about my body and how bad that looks.

    Thank you, I'll keep that in mind. I am actually going to see somebody about my anxiety issues but I don't know what angle they're going to be coming from so to speak. Helping me deal with this? That is the basic cause of it after all.

  • Hi teecayc

    Welcome to the site!

    I am sorry to hear that your condition is affecting your relationship, I hope things get better for you. Have you tried to talk to your partner about how you feel your relationship is being affected?

    I like what iUnique says about trying to focus on any hobbies you might enjoy, to get your mind off your condition and stop it taking over your life. I know there is not much I can say to really help, but I do want you to know that you are not alone in feeling the way you do and things do get better with time.

    xx

  • Hi, thank you!

    Yes he knows all about it. I think he actually gets sick of hearing about it.. sick of my reactions to everything and just sick of how I am about it altogether. I do go on about it constantly, just sly remarks about it whenever I can fit them in, like I'm trying to have a go at myself or something.

    I wish I had more hobbies. I get very fatigued though and over exertion often follows into the next day so I end up doing not a lot most of the time. It would probably help if I got out more.

    Thank you, for the hope.

  • Hi Teecayc,

    I am glad that he knows all about it, that's what a good partner is there for! But talking about your condition with him and making remarks to have a go at yourself are two very different things. It's probably hard for him to hear your remarks about yourself as he cares for you and will find it hard that you can't see yourself the way he sees you.

    I completely understand that getting really fatigued will interfere with you getting out and about, that must be really difficult and frustrating - maybe there are somethings you could try that require less physical energy and can be started and stopped quickly; maybe reading or painting or learning a new language online?

    Glad to read that you are getting help with your anxiety, really hope it helps. Let us know how you get on.

    xx

  • Greetings Teecayc,

    I hope your doing well. Haven't heard about that condition before, but dont lose hope as you aren't alone to live with this issue in this world !

    I think it's more understandable for others about your disfigurement since it's roots from a disease; Hopefully you'll get better and better with the time :)

    if you want to have a talk i'll be happy to be your ''supporting shoulder'', if you understand the expression .

    what's great with Changing Faces is that we can really feels ''home'' talking with people living the same issues as us - disfigurement .

    Be blessed