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Morphea...please help!

morphea

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#1 nickisboi25

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Posted 07 October 2012 - 03:39 AM

Hi guys and girls!

I'm a young man who has had Morphea since I was about 9 or 10. Compared to some people I have it pretty mild, a few patches on the right side of my stomach just under my chest and two small patches below my right arm. But...I'll be honest, I absolutely hate it! It's totally ruined my self esteem and I have no confidence whatsoever. It sounds shallow but I think I'm an alright looking guy with a lot of potential but Morphea just totally ruins me. When I look in the mirror I feel depressed and all I see are the ugly marks.

I'd love to be able to go swimming like I used to, go on holiday and not have a borderline panic attack at the thought of showing my body on the beach and look in the mirror without feeling disgusted. I wanna start going to the gym to get a better body and get fitter but I don't know if I can handle people seeing my skin when I get changed. And relationships...forget it! Having sex with your clothes on is no fun so I just don't bother anymore. Some of the words I use might sound harsh but if I can't be honest here with people who ACTUALLY understand what it's like living with Morphea, then where can I?

I know a big part of the way I feel is down to me and not the Morphea but everyday just feels like a battle for acceptance. I didn't ask for any of this and all I want is to have normal, healthy, beautiful skin like practically everyone else. To know that I'll never have that is so upsetting most times I just break down and cry. I absolutely hate Morphea and feel like I'm cursed to have it.

I don't even know why I'm posting this or what I'm hoping to gain from it. Maybe someone to help me see the bigger picture. Please don't think I'm superficial or vapid, I'm just being honest about how I really feel...

#2 Joelf

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Posted 07 October 2012 - 05:32 AM

Hi Nickisboi25,

Welcome to these forums!

I'm sorry to hear that you've been suffering with Morphea for many years and whereas it may not be as noticable to other people as you think, I can understand that it affects your confidence and self esteem and can be very upsetting and a real worry to you. When I was first diagnosed with Scleroderma and was told what strong medication (chemotherapy) I would be receiving, my worst fear was that my long, curly hair would fall out (especially as I'd just paid a small fortune getting it coloured....that upset me even more!! ;) :o )

I do think that you could still go to the gym and get fit; I'm a keen gym member and although using our showers and changing rooms is rather like showering in the middle of Victoria Station (it's shared with the golf members as well) nevertheless I can usually get my kit on and off without too many other people turning up in an inopportune moment! Through joining a gym, perhaps you could meet others who perhaps would not be bothered about a skin disfigurement, once they got to know you and it might help to raise your self esteem so that you weren't so worried about it either?

I've included a link to a thread we have on the UK subforum regarding Morphea; it's been started by Amanda, who has plenty of first hand experience of this particular form of Scleroderma:

.....What I find amazing about scleroderma, amazing as in can there be such a relentless, unforgiving disease, is that even the localised forms, that don't affect the internal organs or reduce life expectancy, can disfigure, disable and devastate.


You can see from her quote that we do understand how miserable this condition can make you feel and one of the problems with Scleroderma is that it affects everyone differently and something which can appear mild to one person, can have a devastating effect on the quality of life for another.

Now that you've found our forums, do keep posting and let us know how you're faring.

Kind regards,

Jo Frowde
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#3 miocean

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Posted 07 October 2012 - 07:16 AM

Hi Nickisboi25,

I understand how frustrated you are about your body image. It is very sad that society judges us by the way we look rather than who we are. But I will share some little words of wisdom with you : everybody suffers from insecurities about how they look, especially when they are your age. It is even more difficult to know that the things that make you feel so self-conscious are beyond your control. You sound pretty beaten down right now, and that's okay, we have all been there for one reason or another. Thank you for coming here to vent and for support.

Can you take some steps to move yourself to a more positive place? The first might be to work on self-acceptance and focus on the positive things about yourself rather than the morphea. Take this "alright looking guy with a lot of potential" and become that person rather than feeling "disgusted" with yourself. This is your life and it will become what you make of it. You can live your life as the disease, or you can live your life in spite of the disease. If you want to join a gym, could you look into different ones? I know that where I live you can find gyms ranging from the muscle building type to fitness orientated ones to ones geared for older people. Most gyms here offer trial memberships so you can do a short term membership and see if it is a good fit before signing on to a big time and money commitment. If you are not ready for the gym scene and still want to get fit, you could try a walking/running program on your own.

If you can't do this by yourself, perhaps you could get help from a counselor/therapist. There is nothing wrong with seeking help when you need it.

Believe me, I understand what you are going through. I could take what you have written and rewrite it using words like "weight" and "fat" for my younger years or 'lines around my mouth," "thinning hair," "flabby legs," sagging chin," "bent hands" etc. for now. I have been beaten down by this disease and with the help of others and effort on my own have been able to pull myself up again. I try to think of myself as a warrior not a victim. (Most days it works!) I spend a lot of time on a crowded beach and see people of all sizes, shapes, and colors. Although you may feel insecure about the way you look, most people are enjoying themselves and/or are so self-involved they are not focusing on you. Years ago I had a very special person in my life tell me "it's not the bikini, it's the attitude of the person wearing the bikini." Although you are a guy, think about how the way you present yourself has a lot to do with how others perceive you.

I do not think you are being superficial at all. Many people on this forum struggle with the way the disease affects their appearance. Thinning hair, juvenile dermatomyositis, morphea, on and on and on. It is a struggle.

Please come back, to vent, share, and update us.

miocean
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#4 Amanda Thorpe

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Posted 07 October 2012 - 07:32 AM

Hello Nickisboi25

Welcome to the forums! As Jo's said I have both systemic and localised scleroderma. I have massive ones on my thighs and they're itchy and tender.

In terms of the disease you have it mildly as you acknowledge and I wonder if the morphea has become a vehicle for other thoughts and feelings you harbour about yourself. I suggest that you consider counselling of some sort because you are more than the body you just happen to inhabit, you need to realise that and may need help doing so. No one here wants you to be held back by scleroderma that's for sure!

Take care.


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#5 nickisboi25

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Posted 07 October 2012 - 02:36 PM

Thank you everyone for taking the time to read and reply to my message. I've finally spoken to some people who have what I have! That is amazing in itself :)

miocean I LOVE the bikini quote and totally agree with it. My problem is right now Morphea defines me and my life. I see myself as just "the guy with the bad skin".

Its funny you mention counselling...because that's exactly what I'm doing. It's probably been the hardest and at times, most uncomfortable, journey of my life but after stopping once, it's one I'm determined to finish. I know how incredibly lucky I am to be getting the help I need. I talk about my Morphea in counselling and my counselor is amazing. Like I said it's very hard work but if you think I sound not too good now, you really didn't wanna see me 6 months ago.

Amanda Thorpe your quote "I wonder if the morphea has become a vehicle for other thoughts and feelings you harbour about yourself" is so on point it almost scared me. I'm in counselling for other things besides Morphea but I don't really feel comfortable mentioning them.

I am young and appearance is a big factor in my life at this age. Having a disease that changes the way you look beyond your control makes me feel beaten so many times. I'm even getting a bit emotional as I type this. THANK YOU all so much for not judging me and giving me the chance to speak with people who understand what I'm going through.

You don't know how much that means to me!

#6 miocean

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Posted 07 October 2012 - 06:54 PM

Well, Nickiesboi, in a matter of several hours you have made new friends! See how easy that was! :P

It sounds like you are doing many positive things to deal with what you are going through right now. Here is the link to the ISN pages on Emotional Involvement . You will get to see our lovely Amanda in the video.

For me, knowing that I was not alone was such a big help in dealing with this disease. There were times when I have posted being really down and others were there to pick me up...times when I was doing really well and inspired others.

I am glad to hear that you are doing better than several months ago. Life is a roller coaster ride with highs and lows.

miocean
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#7 Shelley Ensz

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Posted 08 October 2012 - 03:45 PM

Hi Nickisboi,

Welcome to Sclero Forums! I'm sorry you have morphea but very glad that you've found us. It sounds to me like you are taking all the right steps to deal successfully with morphea, by getting general support here on the forums and personal support and wisdom through counselling.

What really should have happened is that you should have been given some tools for dealing with morphea, psychologically, back when it first began. Since you didn't, you now have a lot of very unnecessary damage to your self-esteem to undo.

The good that I can see in this is that, as you recover, you could be an inspiration to others who are grappling with similar issues. Thank you for sharing your story, and congrats on your decision to pursue healthy attitudes that will help you live much more happily.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#8 nickisboi25

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Posted 09 October 2012 - 03:28 AM

Hi Shelley Ensz,

Thank you so much for your post. I was just a kid when I was diagnosed and to be honest, I was okay with it. It's only in recent years its gotten a hold of me. It's no one's fault, it's just the way it is. One day I would LOVE to be able to help someone else deal with something like this. I've been given so much I feel it's important to try and give something back...but I need to sort myself out first! And you know what, I think I'll get there :)

Thank you again to everyone for your kind words.

#9 Amanda Thorpe

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Posted 10 October 2012 - 01:36 PM

Hello Nickisboi,

You don't have to share anything you don't want to, never make yourself feel uncomfortable.

I have just finished bereavement counselling, it was appropriate because when diagnosed with systemic scleroderma my life died but I didn't. The life I had, the person I was all deserved a decent mourning and burial so that the new life I have and person that I am could begin to flourish.

Amazing how much power there is in just talking to another person and, as you say, it can be a painful process but it's so worth it. I hope you accomplish what you set out to.

Take care and keep posting.
Amanda Thorpe
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#10 nickisboi25

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Posted 10 October 2012 - 01:51 PM

Amanda, you are so right! Counselling's probably the hardest thing I've ever done. There's so many misconceptions about how men are supposed to be able to handle things and be tough 24/7 but truth is, it takes a strong man to know when he can't go it alone. And an even stronger one to go and get the help he needs. Definitely the best thing I've done this year. In fact my next session is tomorrow and I can't wait!!!

I am having sessions with CBT (Cognitive Behavioral Therapy) do you mind if I ask what technique you and your counselor used? If you don't want to talk about it, I understand.

#11 Amanda Thorpe

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Posted 12 October 2012 - 03:26 PM

Hello Nickisboi25,

It was person centred counselling focusing on the area of bereavement. Keep going, it's amazing what you can achieve!

Take care.
Amanda Thorpe
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#12 kimnboys

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Posted 16 November 2015 - 06:21 PM

My 4 year old son was diagnosed two weeks ago. It started out as a spot on his side that now goes down his side over his stomach across his belly button down the front part of his hip along his thigh all the way to his knee.

We went to a dermatologist who diagnosed him. She is trying to get him into a children's one who is booked up for months. I'm so concerned because of how fast it's spreading. It only took two weeks to get from his hip to his knee. They haven't run any test yet because she doesn't really treat children. I can't stand by for for months waiting on an appointment with her while it takes over his body. When it first appeared a few days later his ear on the sane side swelled up and looked like a elephant ear. Very sore. It finally went back to normal.

He is constantly complaining about his stomach hurting. I ask him and he points to his belly button. Over the past few days he has been complaining that he needs to throw up or that he just did. But it never comes out so I think it's acid reflux. Does anyone else have these problems? Or understand any of this.



#13 Joelf

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Posted 17 November 2015 - 06:42 AM

Hi Kimnboys,

 

Welcome to these forums!

 

I'm sorry to hear that your son has recently been diagnosed with Morphea.

 

I can understand how worried you must be feeling, particularly about the sheer speed with which the disease is progressing. I may be completely on the wrong track (and please note I have no medical training, apart from an out of date first aid certificate) but I do wonder whether your son does have Morphea, as the dermatologist hasn't actually done any tests and scleroderma is such a complex and difficult to diagnose illness.

 

Sickness and nausea are not necessarily symptoms of morphea and may be unrelated. Reflux can be a symptom of scleroderma, but again may relate to something different. Therefore I would suggest going back to your primary doctor, explaining how very worried you are about your son and see whether it would be possible to be referred to a Scleroderma expert/dermatologist any sooner than your current appointment.

 

Please let us know how if you are successful in obtaining an appointment more quickly.

 

Kind regards,


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#14 miocean

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Posted 18 November 2015 - 03:36 AM

I hope you can get your son into a specialist quickly to answer some of your questions and address your concerns.

 

Thinking of you,

 

miocean


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#15 Amanda Thorpe

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Posted 22 November 2015 - 11:50 AM

Hello Kim

You say your son's been diagnosed but with what, localised or systemic scleroderma and if localised, do you mean morphea or linear? Although you've posted on a morphea thread you've not specified which so it seems we are assuming morphea.

I am curious how a doctor who runs no tests, hits on any diagnosis of anything let alone scleroderma, whatever type. Whilst you wait to see this expert it might be worth double checking?

The good news is that if your son does have localised scleroderma, it's not a fatal disease and doesn't affect the internal organs. That doesn't mean it's not a difficult disease to live with but it does mean your son can live with it.

Take care.
Amanda Thorpe
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