HS and Self Image

Living with a painful, disfiguring, dibilitating disease is very hard, not just physically but emotionally. You tend to push people away from you because you do not believe you are worthy of anyones affection. Your think your scars make you hideous. Why would anyone want to sit close to your grotesque body. No matter how much reassurance there is you still can't get the idea permanently out of your head. It may go away for a while but it will eventually creep back.

Your self image becomes damaged.

This disease makes you feel useless. The pain stops you from doing the simplest of things. Even brushing your own hair becomes impossible to do. When you finally decide you are going to work through the pain no matter how much it hurts you very often rip your wounds open wide. This makes things even worse. So you sit, rest and try to heal and in doing so start feeling useless all over again. You want to be able to care for yourself and those around you but you can't. You find yourself feeling like a burden to those you love. You figure that sooner or later they will wish you were not there, that they could run away.

Your self image becomes more damaged.

Sex, one of the most joyous forms of physical intimacy between two people who love each other. But what if your groin area is permanently scarred? What if you constantly have oozing painful lumps throughout your external sex organs? What if the very act of intercourse causes severe pain? How long will your partner stay with you when they cannot share the intimacy that a life long couple should enjoy? If you love your partner you begin to think that it would be best for them to move on through life without you. That they would be happier apart from you than with you. Afterall, you reason, even if the pain and oozing were not there why would anyone ever find you sexually desireable with all your many scars ?

Your self image becomes more damaged.

You love your children with every fibre of your being. They bring joy to your limited existence giving you a reason to keep going. Then one day you come to the realization that you may have passed this ugly, horribly painful disease to them. That they may have to live through the agony that you suffer daily. You begin to blame yourself for possibilities, what ifs? In your mind it is ok for you to suffer but not your children. Please not them. You become heavy hearted and guilt ridden. Your self loathing grows and guilt comes to the fore front. You fear for your children and blame yourself.

Your self image becomes more damaged. 

People invite you to social gatherings but more often than naught you find that you are not physically able to attend. So you do not show up. You no longer take walks or visit friends because of the pain but more so because of the smell that you believe everyone can detect. You wash, clean and perfume but still the thought of someone smelling the discharge from your wounds terrifies you. What if a lesion bursts and leaks through your clothing? Instead you sit at home alone. At first friends stop by and help you pass the time but after a while the visits become fewer and fewer. You really can't blame them since they do have your own lives and you figure that they are probably tired of seeing you ill all the time anyways. You sit at home alone. Your spouse and children become your entire life so much that you are afraid of smothering them. They do a lot for you they shouldn't have to entertain you as well. You feel more and more lonely. You begin to forget what it is like to have friends, to play cards, to have a drink, to socialize. You start to wonder exactly what is wrong with you that is so horrible?

Your self image becomes more damaged.

So why am I writing this all down? Why am I putting to words what many HS'ers feel not just myself? So you can understand the demons I fight everyday. Not only must I live with painful swellings, not only do I loose my mobility, not only do I smell bad from all the discharge... no none of that is enough. This disease affects you all those ways and then puts the final blow upon your head by mentally torturing you. By taking away your self image and self worth. By writing down how it feels, what it does to my mind, I am in my own way fighting against it. The keyboard is my therapist allowing me to express the way I feel at times. Is it unpleasant? hell ya!! but it's out now, I can back away from it all and look objectively at it and gain a well earned reprieve.

It's a constant struggle to live day to day physically and mentally. If someone you love has HS you need to know about these ideas which cross our minds. You need to understand them and not belittle them. You cannot change the way a person feels about themselves at certain periods in their life but you can understand. When they feel mentally/physically at their worst you can hold them and tell them that you are there for them. 

This letter is also an apology to someone I love very deeply. I came very close to destroying a good thing recently by trying to push it away with all the effort I could muster. By trying to get rid of someone I loved very much figuring it was better for everyone involved. Feeling useless, hopeless and undeserving. For that I am deeply sorry. Perhaps I've not damaged things too badly. Only time will tell.

Learn from my mistakes. Do not be afraid to vocalize how you feel. Allow yourself to feel all those emotions but in the end remind yourself that you are worthy of being loved. That you are a beautiful person who did nothing wrong. There is no reason to feel useless, to feel guilty. HS is a disease but it is not you. Do not make my mistake and allow it to control you. In the end you have self worth. You are important. You deserve to be loved.

Do not let HS damage your self image.