EMOTIONS – how do you feel about having LS?

When you are first diagnosed with LS and are told it is incurable, all kinds of emotions can come to the surface.  Many people say that they feel like freaks, some say they feel dirty, others are angry, devastated, sad, anxious, helpless, isolated, fearful.  The fact is that when you are given a diagnosis of a long term, ongoing and incurable disorder, you realise that life may not ever be the same for you again, something about you has changed, you may experience loss of self image, femininity (or manliness and masculinity if you are a man with LS).  Your confidence may be affected and you may even grieve for the person you felt you used to be and wonder who you are now and how on earth you will find a way forward.  Certainly, you may also feel that you have lost control over your life.  The question is often asked “how can I cope and how do others cope”?

Remember that you are not to blame for having LS, nothing you have done has caused this to happen to you.  Emotions are part of being human and whatever your feelings are, its O.K. to have them.  Bear in mind that you can improve and reach a stage where you feel better, your emotions are not pulling you down and you are able to enjoy life.  You may need to work at your own healing for some time.  If you are feeling really low and finding that LS has “taken over your life” then it may be time to enlist some help from a professional person who can listen to you and help you on the road to recovery.

One positive way to cope with having LS is to try to get the symptoms well managed and this is something that you will need to talk through with your consultant and something that may require perseverance. 

Self-help can include, taking more care of your health generally and examine your eating habits, make sure you are eating a healthy diet.

Other self-help may mean consulting a counsellor, reading books that will suggest ways to build your inner strength.

For some, being in touch with other people who have lichen sclerosus is extremely helpful. There are some emailing groups on the internet. You can search the groups link at Yahoo for these. For women in the UK, the Vulval Pain Society runs 4 workshops a year. VPS also gives details of some local meeting groups on their website. NLSSG does not have local meeting groups. Support from NLSSG is normally on a one-to-one basis.

In time, you will find your own path, your own coping strategy and start learning to live with having LS.