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Coping sounds like just getting by, I am not just getting by. My life is rich with fun encouraging friends and family. I've got a reserve of people I can call to share news good and bad. I don't let a day pass with out getting hugs. Wearing the effects of lipodystrophy may be inevitable; choosing to suffer at the remarks, treatment and glances of others is not. You can have a skinny face and a fat tummy and be happy, love living, go out and do life.
I have felt the despair of feeling different from everyone. Of being too skinny to be considered sexy, too skinny to be womanly, to muscular to be a woman, I have sensed other people's discomfort, I have heard other people's insults and ridicule.
How to Help Yourself
This works, I know, I've lived with lipodystrophy for over 30 years and I still get hurt sometimes. But my turnaround time has gone from weeks to minutes. It is connecting with a loved one that brings us around.
1. Meet another lipodystrophy patient; meet them by email, by phone, meet them in person. Find someone who has this syndrome in common with you. It does not matter if the original cause of the disease is the same. If the effects are similar you've found a compadre. Meeting him or her and seeing how wonderful they are in spite of looking different will give you the experience of recognizing that you are pretty amazing, too.
2. If you're depressed get help. Therapy, medication, hugs, religion, all of it. Ask for help you deserve it. Before you know it you'll be the helper as well as helpee. Being of service is one of the things that can be a real positive charge. I like remembering that there are times when I am so in love with life, so curious about the wild coincidences, the accidental meetings, that I never want to quit. Just remembering that this is possible gives me enough energy to ask for help.
3. Part of the solution is to take extremely good care of yourself. Get enough rest, exercise, eat foods that are fun, read things that uplift you, stay connected with fun people. Sounds like a recipe for a good life no matter how you feel about yourself.
MOST IMPORTANT HAVE AN EMERGENCY PLAN
Tell someone who loves you that you are embarrassed, you are ashamed that you are embarrassed, you are crushed. Turn to someone who listens with his or her heart who will acknowledge your pain and allow you to express it, until you're ready to feel better.Then let them comfort you by reminding you how lovable you are and what is beautiful about you.
YOU WILL FEEL MUCH BETTER
My name is Kate Hannigan, I have had partial lipodystrophy for since I was 6 years old. It took me 30 years to find 1 other person who has lipodystrophy. See, you are already way ahead of me. You have my brochure in your hand, or you have 'virtually' met me. I have learned that it is easier to cope when you know you are not alone.
Where I am now: My disease is a gift, it has kept me from surrendering, from being ordinary, from ever forgetting that my life must have a purpose.