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weeepingwillow

A long time sufferer of acne/scarring. Acne has altered my life and mental state.

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Hi everybody. So pleased to find this board. I have lurked here for some time and have decided to join in with you -if you will have me, LOL.

Before I talk about me and my struggle......

I wish to thank all of you for sharing your deepest feelings, pains, and successes. Your stories and experiences give hope and comfort to others. This kind of support can be a life saver. I feel so similar to so many of you here. It is an amazing thing to have people to turn to in what can be a very difficult time.

When we hear of a person's pains and sorrows from this condition it is felt on a deep and soulful level. When we hear and share the experiences of others in the same situation it can keep us going. When we see people that have successes and healings of this disfigurement the happiness for that person's healing is real and genuine.

Hope is all we have sometimes. Without hope there is not much else. That is what can be found in the people here. This is a gift and a blessing that cannot be measured.

Here is my acne/scarring background:

Got severe cystic acne on my face @30 YO. I tried all sorts of medications (tetracycline, hormones, etc.) Nothing worked. The acne would come and go and got worse each time.

Finally, after 4 years of this condition I thought the acne had cleared up. But I was left with horrible scarring. I had developed scarring of several holes (large ice picks) and some rolling scars on my cheeks and chin. So, thinking that the acne was over I saw a PS in order to correct the scarring.

I had laser surgery and 3 excisions. The results were pretty decent and I could have lived with it. I was so excited and began to bask in the success and come out of my shell into the real world again. It was a new day filled with hope and anticipation.

BUT, after 6 months the acne returned and was as bad as ever. It was so bad that I now became completely homebound.

After suffering acne for another several years with no cure I finally found Accutane. What a Godsend it was! I took it and have not had any problem with acne since. This is the ONLY drug that really works for severe cystic acne, IMO. No more acne now! And I know if it does happen to return I can exterminate it quickly with Accutane. Whew, what a relief.

HOWEVER, there is still a huge problem. I again have severe scarring. The laser and excision work I had done was for naught. It is worse this time. Now, I have a large depressed hole on my nose (at the base) near the cheek, a large deep and depressed fibrous hole near my mouth, 2 large deep and depressed fibrous holes on my chin, and several ice pick and rolling scars on my cheeks. These are very large and deep scars that cannot under any circumstances be 'covered up.' There are holes with missing tissue, and as some of you know, there is no hiding that. This is my present condition.

As for the emotional and psychological aspects:

Have dreamed of living a normal life again for every second of every day for the last 11 years. I have also developed a panic type mentality when facing other people and/or leaving my home for any reason. I have no friends and no activities or hobbies outside the home anymore. Have deteriorated to the point of hardly leaving my house except for food and supplies, and only other times when it is unavoidable to do so. I do often take drives at night with my faithful friend and companion, my dog. Getting out to do this does keep me from going over the edge sometimes.

I know that you all will understand this condition is not due to simple vanity and self-pity. Acne and acne scarring can be a disfiguring and serious matter. Most people do not understand and say, "It's not that bad" or "Oh, you cannot even notice." I know that is not at all true and I understand they are only trying to help. However, it does not help or change my life or how I feel.

This condition has altered who I amliterally. This state of being can be a severe alteration of one's mental state and has far reaching psychological implications. People lose friends, jobs, and hobbies; and even consider suicide in some cases.

I just want to live again. I want human companionship. I want to be able to talk to another human being face to face without the overwhelming and powerful urge to flee. I want to take a walk on my street with my dog in the daytime. I want to be able to get out of the car anywhere I choose and participate in activities. I want to look in a mirror and not have to turn away out of disgust. I want to go places and not be thinking how fast I can get out of there and get home to safety. Sound familiar?

At the same time I am grateful to be alive and cherish everyday that God gives me on this earth. I recognize that my disfigurement pales in comparison to so many other conditions and/or disabilities others may have. I am grateful that this condition can be improved where as other conditions cannot. It is truly a gift to have hope for some form of restoration. So, we are truly fortunate and should be grateful for that. Yes?

As for hope for the future:

It has now been 3 years since I finished the Accutane and I am finally brave enough to go see a doctor again. I am going to go on 6/2/09 to a PS for a consultation to discuss excision or excision grafts on the 4 large scars. The rest I can deal with after that. These scars are just so huge that it's best to start with those.

If this treatment does not work, I am not sure what that will mean and it's to painful to imagine that. If I lose hope.......???

BTW, I would be glad to start a thread in the scar section and to share pictures of before and after (if you are all interested) so that anyone who finds themselves in a similar position or with similar scarring can learn/benefit from this experience. I have benefited from some of yours, so the least I can do is offer whatever I am able to offer in return.

And, for those who have already shared their pictures: Thank you so much! I know that doing that has given me and others hope.

Well, I know this was long and I thank you for taking the time to read it. I have never been able to express what I have written here to anyone. I have held these feelings inside for so long.What a great weight off the shoulders just telling our story can be huh? Thanks for listening. Really. :)

I look forward to officially meeting and getting to know other people here.

*

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Welcome to the boards!

Great post, and thank you for sharing your story, I can certainly relate. I myself have scarring after suffering from many years of severe cystic acne and I understand how hard it can be to face life with such problematic skin. Every day is a complete struggle and even though I'm always trying to fight my insecurities, it's extremely hard to remain confident and upbeat sometimes when you have to carry around these scars for all the world to see.

The small chunk of hope that I may be able to make mine look a little better at least through treatment, and that new and more effective methods of scar removal will continue to be developed as time goes on is what helps me to keep going when things get really rough. Someday, hopefully, things won't have to be so difficult. I wish you the best of luck in your own quest to achieve scar improvement. No one should have to deal with this affliction and you sound as though you've already suffered far too much with this so my heart really goes out to you.

Good luck!

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Welcome to the boards!

Great post, and thank you for sharing your story, I can certainly relate. I myself have scarring after suffering from many years of severe cystic acne and I understand how hard it can be to face life with such problematic skin. Every day is a complete struggle and even though I'm always trying to fight my insecurities, it's extremely hard to remain confident and upbeat sometimes when you have to carry around these scars for all the world to see.

The small chunk of hope that I may be able to make mine look a little better at least through treatment, and that new and more effective methods of scar removal will continue to be developed as time goes on is what helps me to keep going when things get really rough. Someday, hopefully, things won't have to be so difficult. I wish you the best of luck in your own quest to achieve scar improvement. No one should have to deal with this affliction and you sound as though you've already suffered far too much with this so my heart really goes out to you.

Good luck!

Hi.

Thank you for responding and explaining your situation.

Seems that you fight your insecurities daily too. I know what you mean, friend.

The struggle is that although we do this mental exercise and fight faithfully (out of necessity, will, and determination) it seems to fail sometimes. We tell ourselves that the only thing that matters is who we are and that we can do all the things that others do. That, it is up to us how we approach and overcome this. That, if we miss out it's our own choice. But, even with all that mental 'cheerleading' we can sometimes or perhaps often end up back at square 1.

However, would you agree that there are some positive things that happen as a result of this daily struggle in that it builds our courage and fortitude? And, humility in ourselves and a deep appreciation of people for who they are begins to develop on a level previously and otherwise unknown?

It sounds as if you are a bit better off than I, as far as participation in life? I hope so. If so, how have you overcome your obstacles to whatever level you have? Acceptance? Attitude? Other? It sounds as if you have put conscious efforts into this fight, and I admire that.

I see that hope is your best medicine. Mine too! You would think that in todays technologically advanced world that a sure fire and effective method for fixing scars would be no problem at all. Geez. Certainly it will be at some point. :)

Glad to meet you, and, good luck in your efforts too.

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Willow,

You are not alone on this one! I can very much relate to your personal experiences with acne. After being clear for several years, I recently had a terrible break out, which left scars and blemishes on my cheeks and nose. Prior the break out, my cheeks and nose were clear, I would only get the occasional pimple along my jawline. But now that I have pimples and hyperpigmented scars (i have tan skin), I've changed so dramatically as a person. Even if I no longer get acne (i still do FYI!), the damage to my face has already been done. I have a bump on my nose which eats away at my confidence. I have dark marks on my cheeks and forehead. I have rolling scars on my jaw line (which surprisingly don't bother me bc i've had them for a long time, back when I didn't care).

I used to be a very social person - I loved going out, meeting people, and just having a good time with friends. I was not cocky by any means, just a confident person, who walked around with his a chin up. Now, I'm the complete opposite. I'd much rather stay in my apartment or office, even during the weekends!!, instead of going out with my friends and having a good time. And I absolutely hate that! Everyone says "oh no one cares about what you look like! it's really nothing!" but I am so disgusted with myself! I don't even think I can take a close up picture with friends anymore. Its tough to go out because I look at everyone else around me, and they never seemed to have struggled with their face for a second. Perfect skin, without the slighest blemish...

I've been feeling better mentally and emotionally - but everyday is definitely a struggle. Whether I have a 'good' or a 'bad' face day, I'm still always plagued by the burden of my acne/scars. I haven't had one of those 'carefree' days in months - and honestly, I don't think I'll ever feel those days again, which saddens me tremendously. :(

Hi everybody. So pleased to find this board. I have lurked here for some time and have decided to join in with you -if you will have me, LOL.

Before I talk about me and my struggle......

I wish to thank all of you for sharing your deepest feelings, pains, and successes. Your stories and experiences give hope and comfort to others. This kind of support can be a life saver. I feel so similar to so many of you here. It is an amazing thing to have people to turn to in what can be a very difficult time.

When we hear of a person's pains and sorrows from this condition it is felt on a deep and soulful level. When we hear and share the experiences of others in the same situation it can keep us going. When we see people that have successes and healings of this disfigurement the happiness for that person's healing is real and genuine.

Hope is all we have sometimes. Without hope there is not much else. That is what can be found in the people here. This is a gift and a blessing that cannot be measured.

Here is my acne/scarring background:

Got severe cystic acne on my face @30 YO. I tried all sorts of medications (tetracycline, hormones, etc.) Nothing worked. The acne would come and go and got worse each time.

Finally, after 4 years of this condition I thought the acne had cleared up. But I was left with horrible scarring. I had developed scarring of several holes (large ice picks) and some rolling scars on my cheeks and chin. So, thinking that the acne was over I saw a PS in order to correct the scarring.

I had laser surgery and 3 excisions. The results were pretty decent and I could have lived with it. I was so excited and began to bask in the success and come out of my shell into the real world again. It was a new day filled with hope and anticipation.

BUT, after 6 months the acne returned and was as bad as ever. It was so bad that I now became completely homebound.

After suffering acne for another several years with no cure I finally found Accutane. What a Godsend it was! I took it and have not had any problem with acne since. This is the ONLY drug that really works for severe cystic acne, IMO. No more acne now! And I know if it does happen to return I can exterminate it quickly with Accutane. Whew, what a relief.

HOWEVER, there is still a huge problem. I again have severe scarring. The laser and excision work I had done was for naught. It is worse this time. Now, I have a large depressed hole on my nose (at the base) near the cheek, a large deep and depressed fibrous hole near my mouth, 2 large deep and depressed fibrous holes on my chin, and several ice pick and rolling scars on my cheeks. These are very large and deep scars that cannot under any circumstances be 'covered up.' There are holes with missing tissue, and as some of you know, there is no hiding that. This is my present condition.

As for the emotional and psychological aspects:

Have dreamed of living a normal life again for every second of every day for the last 11 years. I have also developed a panic type mentality when facing other people and/or leaving my home for any reason. I have no friends and no activities or hobbies outside the home anymore. Have deteriorated to the point of hardly leaving my house except for food and supplies, and only other times when it is unavoidable to do so. I do often take drives at night with my faithful friend and companion, my dog. Getting out to do this does keep me from going over the edge sometimes.

I know that you all will understand this condition is not due to simple vanity and self-pity. Acne and acne scarring can be a disfiguring and serious matter. Most people do not understand and say, "It's not that bad" or "Oh, you cannot even notice." I know that is not at all true and I understand they are only trying to help. However, it does not help or change my life or how I feel.

This condition has altered who I amliterally. This state of being can be a severe alteration of one's mental state and has far reaching psychological implications. People lose friends, jobs, and hobbies; and even consider suicide in some cases.

I just want to live again. I want human companionship. I want to be able to talk to another human being face to face without the overwhelming and powerful urge to flee. I want to take a walk on my street with my dog in the daytime. I want to be able to get out of the car anywhere I choose and participate in activities. I want to look in a mirror and not have to turn away out of disgust. I want to go places and not be thinking how fast I can get out of there and get home to safety. Sound familiar?

At the same time I am grateful to be alive and cherish everyday that God gives me on this earth. I recognize that my disfigurement pales in comparison to so many other conditions and/or disabilities others may have. I am grateful that this condition can be improved where as other conditions cannot. It is truly a gift to have hope for some form of restoration. So, we are truly fortunate and should be grateful for that. Yes?

As for hope for the future:

It has now been 3 years since I finished the Accutane and I am finally brave enough to go see a doctor again. I am going to go on 6/2/09 to a PS for a consultation to discuss excision or excision grafts on the 4 large scars. The rest I can deal with after that. These scars are just so huge that it's best to start with those.

If this treatment does not work, I am not sure what that will mean and it's to painful to imagine that. If I lose hope.......???

BTW, I would be glad to start a thread in the scar section and to share pictures of before and after (if you are all interested) so that anyone who finds themselves in a similar position or with similar scarring can learn/benefit from this experience. I have benefited from some of yours, so the least I can do is offer whatever I am able to offer in return.

And, for those who have already shared their pictures: Thank you so much! I know that doing that has given me and others hope.

Well, I know this was long and I thank you for taking the time to read it. I have never been able to express what I have written here to anyone. I have held these feelings inside for so long.What a great weight off the shoulders just telling our story can be huh? Thanks for listening. Really. :)

I look forward to officially meeting and getting to know other people here.

*

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Thank you so much for posting and welcome! This site is wonderful, and truly provides an oasis of understanding and support. it is good to meet you :cool:

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Willow,

Thank you for your post. Your thoughts and feelings mirror mine exactly. I've been lurking here for years and only officially created a username yesterday.

I've been suffering from adult acne for 13 years. I've done one course of accutane, been on multiple rounds of antibiotics, several different topicals and now am undergoing smoothbeam. My scars aren't too terrible, just some smaller ice picks one on the sides of my cheeks, but my cysts are what is unbearable. Every other month or so I get a huge cyst that gets infected through no fault of mine and just bursts and weeps all over. As soon as i can manage to get it to go away, my face might looks decent for a couple days and then it starts all over again. I just chase these infections around my face. Some of my cysts have been so bad that i've gone back to the dermatologist for 3 injections in the same cyst! I'm on here today because this month it was so bad that i couldn't go to work. I've missed work several times in the past 12 months, all due to my skin.

I agree with you that acne has changed the very person that I am. It makes me feel crushed, depressed, betrayed and disgusted. Even today, while going to the pharmacy with a band aid on my face, i look around and see all these beautiful people, all with beautiful skin. i don't understand it. I keep strictly to a low glycemic diet since i recently heard that that helps acne. i also avoid at all costs: caffeine, nuts, sugar, dairy, wheat/pasta,rice, alcohol. what's left? not much. i can't even tell if the diet has made a difference. i don't smoke, don't drink, exercise, drink tons of water and still no relief.

on days like today, when i had to go out in public, sit in the derm waiting room, and later at the pharmacy, i almost start to feel like i am having a panic attack. i start to feel tightening in my chest and i feel so uncomfortable i just want to go home. and once home, i get sickened if my path crosses a mirror. i've had to take the mirrors out of my bedroom because i just can't take looking at my face with all of my infections.

anyway, enough about me. i just wanted to let you know that you are certainly not alone. i wish i had an answer for us. some light at the end of the tunnel. i can't even imagine a life where i could go swimming (no makeup) or not have an anxiety attack as i approach the mirror each morning to see what's happened overnight.

no one else understands. but we all do. good luck at the derm in june. i've been doing smoothbeam and to be honest, it's great, but very expensive. at this point, i'm desperate and i'm paying for it anyway i can. so far my results have been positive, but i'm far from finished. it takes many times if you're acne is severe.

good luck!

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Wow so much of your story resonates with me especially the paragraph on just being able to go out and see people comfortably. It is such a sad state we are all in and its great to have optimism but some days it can be pretty tough.

My desires have changed so much over the years. It's like more than anything in the world all I want right now is to be able to hang out at a diner with friends and have a relaxed fun conversation. It really feels like I've lost something of myself that will make it impossible to be that kind of person and its hard to cope with.

Optimism aside, what kind of fucked up situation are people like us in? There are worse things sure but that doesnt make this things any easier for us and people should understand. Although I don't necessarily want pity, I'd take it over apathy and spite.

geez fuck this shit. I'll get through this but still fuck it.

ps hope things go well for you and others in our situation. We deserve some happiness no?

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ruski and carrie 54: Thanks for stopping in and for your warm and sincere welcome!

I know EXACTLY how you all feel. It helped so much just to read your posts and be able to identify with them and not feel alone. Each person has their own way to express and explain what changes have manifested in their lives but it all seems to boil down to being a changed person with a drastically changed life.

Hose3cu: That is something to go so many years clear and then.......disaster. I know what it's like to think it's over only to be shocked and devastated by reality, yet again.

I completely feel the same way you do about your personality change. I was once very outgoing, social, and confident too. I know what you mean about not being cocky, but, simply a person who was once an extrovert that welcomed socializing and embraced people and life with zeal. For me that is a memory too.

And, what you said about taking pictures is so true. I cannot take pictures anymore either. NO WAY. I have not taken pictures in years except one time. I was in a situation where I could not refuse and I was so humiliated when the picture was taken. It was an awful experience. So, I get what you say all to well. Seems a small thing to some I guess but for us it is huge.

As far as dreaming, hoping, and wishing for just onecarefree day.....I know that feeling as well. Wouldn't that be something to have again? I know that dream too. Thank you for telling your story. It means a lot to me. Your story really came alive.

hyacinth: I completely identify with you too. I am so glad that your scarring is not severe. However, I understand that the cysts are just as bad and humiliating to deal with.

As for missing work.....Yep, that's part of the sufferings. I mean to actually miss work? See, that's what many without this problem do not understand. Missing actual days at your job is a severe consequence that can affect every aspect of your life! That's very serious. This is no joke is it? I have been there too, my friend. I have even lost jobs due to absence. I feel you. My heart aches for you.

As for band aids on the face....Yep. Have done that too. When my acne was active I too would use a band-aid.

Sounds like you have the 'urge to flee' when in public situations too. Isn't that something? You get yourself all prepared mentally to go conquer errands/appointments and you leave the house thinking "Ok, today I will do it!" or "I have to do this so be strong and go for it" but, when you get there.....well, you know what happens next.

I also have no mirrors except in my bathroom BTW.

Thank you for telling your story too. It was very helpful.

Good luck with the smoothbeam. I will be interested in updates to your treatments to see how you do!

mebe: You said a lot in a paragraph. As you have pointed out, (and I think you are correct and speak for most of us) that the most important thing we have lost is human companionship. This is something we as humans naturally crave and need to be healthy and of sound mind. Without this companionship we become altered and changed in a way that is difficult to explain but is understood by others in this predicament. Very deep pain is involved here.

There is a part of us that cannot and will not give up, a part that fights tooth and nail for a normal life, yet we are prevented. That is frustrating as hell. We want simple things. No-one here has said they want money, fame, etc. All we are saying is that we are wishing for simply a NORMAL life. Is that too much to ask?

Yes, we do deserve happiness!

Thanks for your post. I feel the same frustrations you do.

To all: I do not want or mean to sound negative only. I wish to encourage each of you and myself to keep fighting and to keep hope alive. I bet you would all wish and say the same.

As we adjust to our lives we begin to accept what we must and overcome what we can, each of us at our own pace and in our own way.

Thanks again for your thoughts everybody.

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I honestly believe that acne does change us. I don't mean to insult anyone but to some extent I think that is inevitable - and I don't just mean the physical changes. Acne has changed most aspects of my life. I used to be popular but very soon became a loner. It changed the type of music and movies I liked. I just couldn't stand to listen to/watch anything that my former non-acne suffering friends liked. I couldn't stand to listen to most contemporary music because it is basically about relationships - which are things you don't want to hear about when you are suffering.

I don't mean to sound negative because I honestly believe a lot of positives come out of acne. I know that I got the education I did thanks to acne because if I didn't have acne I wouild have been lazy like my former friends and left school at 18.

I'm at the point in my life where I can't every imagine being completely acne free at 35 but I feel I have it under control. God that may be a depressing message for a lot of you but I'm sure most of you will grow out in your 20s.

I do see the negatives in my life thanks to acne (lost friendship, missed relationships and so on) but try to be thankful for the positives it gave me. And I know that for good/bad and you never can know - my life would be different today without acne.

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Wow. You know how to tell a story. Looks like you will be a very good contributor to the boards.

I think in this moment, you're truly living. Most identify life with daring adventures and epiphanies. Making a real connection is what life is to me. Millions of strangers wander the streets, unaware of these feelings.

Simplify your life. Those opportunities are still present. Maybe you could take your conclusion further, and apply it towards the things you're asking for. A walk in the park with your dog is feasible. The activities are accessible. You need to show the other strangers this remarkable person. Maybe you can be the one to save a zombie who doesn't know what love is.

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