Illness vs Vanity.....

[Vicrum88]

As a new recruit to the Scleroderma world, I'm finding new questions I want to ask every single day. Today's question? -

When illness and vanity clashes, how do we adjust, and accept a new appearance that we have no control over and didn't ask for? And in this situation, who wins that battle? Is it as simple as "mind over matter"?

I hold my hands up - while I understood that my health would change my appearance, I completely underestimated how much it would change and how big the impact would be on my mental health.

I've always suffered with my confidence and self esteem. After a battle with anorexia and self hatred, I put on some weight and started to rediscover myself as a person. I finally accepted myself for everything I was. The highlight? An opportunity of a modelling career at the age of 30. Did I go for it? - of course I did! And I loved it!...... And then my career came to a screeching halt with my diagnosis.

This is where my anger comes in.... hyperpigmentation of the skin is destroying my me and it's breaking my heart. My feet are purple/brown in colour and my legs and arms have a red/purple honeycomb rash on them and it's spreading quickly.

I now cannot stand to look at myself in the mirror when I undress. The realisation that I will probably never wear a skirt or shorts ever again is hitting hard.

I'm 32. I've spent my whole life nursing and looking after people so modelling was a welcomed change of scenery.... to have it ripped away so quickly hurts me.

So what happens now? Do I find a new self acceptance all over again? Because just now I don't think I can accept myself. I'm single.... Will I ever have the confidence to date again? And if I do, will they be repulsed by me when they see what I look like?

I refuse to believe I'm the only woman with this condition who's appearance has changed...

Ladies (and Gents!), give me a wave if you feel the same to let me know I'm not alone with this!

Love,

The Human Giraffe xoxo

[MissusTee]

Hi,I,m 52, and the skin on my face is affected. The worst thing is slight bowel incontinence. It makes me feel dreadful about myself. I too have a history of eating disorders, and I had significant weight loss due to small intestinal bacterial overgrowth- that really played with my head!

So, no it’s not vain, your feelings are valid and are part of the journey. Most of us want to look ok, and when you’re unwell it can be a negative mix. There’s no answers just do what makes you feel better about yourself!

[momo17]

So sorry to hear how you’re feeling but totally get it. I’ve lost my top lip with scleroderma n terrible lines round mouth n loss of volume. I’m 49 but my mouth area looks like I’m about 90! It has affected me terribly n I’ve lost all my confidence. I don’t even know the person who I see in the mirror sometimes. I think we are too hard on ourselves that we’ve to be thankful for just surviving this illness n we’re being vain otherwise. I’ve tried all sorts to help. Fat transfer, fillers. Nothing has really helped but part of me just can’t yet accept this is what I may look like for the rest of my life. Maybe if I did, it would make me happier in myself but in a way I feel that’s giving in to it so it’s a catch 22. I do a lot of meditating n visualising of what I would like to look like which is just really a return to my old self. Reiki has helped with confidence. I know that’s not for everybody but i think if there is chance this affliction is forever, I’ve got to find a way to live with it the best i can. Good luck with navigating your way through this. You are not alone in wanting to look ‘normal!’ Xx

[positivedaybyday]

HI, I was diagnosed in 2017 with the worst of the worst "Acute Diffuse Cutaneous Systemic Sclerosis"

It has been a very hard road to travel with many hurdles on the way as it robbed me of my free active life.

I can relate to you with body changes & how the mirror becomes your enemy as you hate what you see.

Speak to your consultant as each case is different in severity. There is phycological help at the hospital & via your Doctor. I found these sessions helped me adapt to all the changes that happened.

My nose went smaller, my mouth restricted with lines above the top lip similar to someone who has smoked all their life. My whole body was taught & it felt like I had boa constrictors on my arms.

My face at the beginning was tight & moonshaped due to the steroids. I had a time of excess hair growth in different regions & none in other places. I often cried during the first few years at the dramatic change.

With my sessions I learnt not to be too hard on myself & become in charge of this disease to fight for the person I am

Don't forget you haven't changed inside, you're still the lovely person you ever were. Seek support from family & friends too & open up about your feelings.

I'm single too though twice your age.

Doors can open at any time. I remember once being in hospital & a lady in the next bed had terrible psorasis over her whole body. She met her husband through involvement in hospital trials so you have to keep hoping.

As far as the modelling goes, if it's what you enjoy doing fight for it.

Look at the lady who had acid thrown in her face, she''s battled & is now on TV hair adverts!

Keep positive & keep hoping, its what helps us keep fighting.

Good luck xxx

[Sanmateogirl107]

having a good support system is a must. stay with people who uplift you and love you always! if someone does not understand what we go through i learned to walk away and not be sucked into that hole with no escape. my hands are turning ugly bone degeneration due to scleroderma but i have learned to accept it its part of me and since i really like who i am its ok. having great doctors, counselors really helps. your very special please do not give up. love julie

[Vicrum88]

Wow!! Thank you to all of you guys for replying to my post! Sanmateogirl107 positivedaybyday momo17 and MissusTee !! I'm so thankful to you guys for sharing your experiences with me. It really does help to know in not alone with this.

When people get poorly, I suppose for many people there is the outlook of "you've got more important things to worry about than your image", but when something affects you so directly, it's hard to not care about it. I've lived with the pigmentation on my foot for a couple of years now so I had accepted that for what it is but then it spread so quickly in the blink of an eye. I just didn't expect it to spread at 100mph.

With regards to my modelling..... I had a good run with it and I'm proud of what I've achieved in only a couple of years. I must stress that it's not a case of photographers not wanting to work wirh me, it's ME who's completely brought it to a halt. Photoshop is a wonderful thing but it can't fix my confidence or my mobility.

I'm one of these people in life who will always try to find the silver lining in the clouds. I've laughed with my specialist in the past with the attitude of "well if my rash keeps spreading and goes a bit more evenly, I'll never need to false tan again!" And I've even gone as far as to say "and seen as my skin is going tight I shouldn't need any botox in the future".

With working in the medical industry for so long, I know how important it is to laugh at yourself when you can and keep up moral but I'm struggling to keep laughing at the moment.

And admittedly, it's not just my skin..... having heard all your experiences, I feel comfortable enough to disclose to you that my teeth are falling out, my hair is falling out in handfuls, I've grown a moustache and beard, and the scaley bad skin on my face is driving my insane!!

Fingers tightly crossed that my specialist can at least help with my skin when I see her at the end of February. I haven't had a face to face appointment with her since my diagnosis in December so hopefully she can help me.

You're all amazing people!! I'm so sorry that I didn't know about this illness till now. I'm so sorry that you've all struggled in different ways throughout. I'm lucky to have been welcomed into such a supportive community by you guys xxxx

[Jen3131 in reply to Vicrum88]

Thank you for your post and to everyone who responded. It’s so hard to tell people, when they have no personal experience, your worries especially when it comes to ‘vanity’. I have found the changes really hard to accept plus have had to come to terms with the fact that I may not be spending my retirement as actively as I had thought. I am adjusting slowly and it helps to know I’m not on my own with this. ❤️

[Bec9680]

My heart goes out to everyone on here battling this awful disease. I’m in the same boat, this disease does a lot to your mental health I was 35 when diagnosed and now 40 and have been fighting so hard to find the old me. I need to share a treatment I’ve been on past 2 years that seems promising. I would say I’m about 50% better mouth got looser whole body did I can tell a huge difference. It’s called the AP or antibiotic protocol you can buy the book Scleroderma the proven therapy that can save your life it explains it. Also go to the roadback.org to read remission stories. I just finished nursing school a few months ago and this treatment just makes sense to me. Also make sure eating a anti inflammatory diet and taking probiotics and yogurt to balance gut bacteria. This treatment was my last hope and thank God some ladies took the time to share it with me!

[Kilncadzow]

Don’t be too despondent. I had scleroderma when I was in my very early 30s (I’m now 74) and no one would know by looking at me how I’ll I’d been. I didn’t have the discolouration problem but I looked as though I’d had a very bad face lift - no dimples or expression lines and I couldn’t even wear make up or do my hair properly to try and disguise things as I could barely lift my arms above me shoulders. My arms and legs were shiny and solid to the touch. The only “reminder” I have left is that my right hand is clawed but not so badly that I can’t do things and I have considerably less lines on my face than friends of my age or younger (definitely a positive). Hope things improve soon for you. You’re not alone!

[Flouzet]

Hi,

I read your post and my heart went out to you. I am an older lady with many years of living with systemic scleroderma so I've had a few lessons on my body image along the way...! I was always considered to be very attractive (although not a model like you!) and my first husband enjoyed ownership of the compliments - they were important to his ego, and in some ways a duty for me ! Moving on, many years later when I was nearly 50, I met a new man – who loved me for who I am and when I told him about my illness, giving him the option to escape, he refused to be deterred. We moved to France and had 15 years of great happiness, and I see no reason why you should not find this too, the only thing holding you back is your own self image – learn to look at yourself - not an image in the mirror, but that beautiful personality that is the true you, and you will be amazed at how the world opens up for you.

Simon taught me an invaluable lesson – to accept that the important people in my life love me for who I am. Just as I love people for themselves I must allow them to return the favour ! I am sure that when you were nursing / caring for people you didn't judge tpeople for their looks or even their disability but for their character – good bad or indifferent !

There is a true freedom to letting the outside image go and allowing youself to shine through. It's not always easy, and I have days when I am so very angry with my body but I try to have a supply of chocolate or some sort of treat for those days, which usually works (denial is my main coping method if I am honest).

Bon courage Human Giraffe, and if I can be of any help, please let me know

Caroline

[Janpmat]

Hi Vicrum88 I'm sorry to hear you're having trouble accepting the way you see yourself, I hope hearing the stories of others gives you courage to be proud of yourself and beggar the changes! I have problems with lesions all over my forearms, and my fingers are misshapen and curl inwards but I refuse to hide away, although short sleeves during the summer took me a while to be confident wearing, but then I thought it was only my own vanity that was stopping me from showing my arms (can't do anything about my hands) so now I wear what I like and don't notice the occasional strange looks I get, so I suppose I've learnt to accept myself as I am now. I hope you get there too. Love Jan x