[Aggie69]

Not been on here for a while. Hope you are all keeping as well as can be expected.

Just needed some advice after a row with hubby last night. To get to the point, I seriously believe I have the beginnings of body dysmorphic syndrome. I'm aware that since my skin/hair symptoms started and I have had to cover up using make up/hair bands, I have become more self conscious to the level that if I walk past people laughing I believe it is directed at me. I believe that people are continually looking at me because I look stupid/strange/ugly etc.

I feel uncomfortable/often make excuses not to socialise and can no longer accept a compliment. I am continually comparing myself to others (stupidly to teenagers half my age) and get jealous when I see other women looking 'normal'. I even hate watching adverts on TV for shampoo/hair dye etc.

Things came to a head last night when I demanded that every single holiday photograph of me be deleted because I cannot bear looking at myself and do not want others to see them either.

I was just wondering whether anyone else feels like this and whether it is something that I should mention to Dr D'Cruz at my next appointment? I don't want him to think I am being vain as I know there are other women who are struggling with illnesses such as cancer and it does make me think I am shallow for being like this but I just can't seem to help the way I feel.

 

[Katharine]

Hello Aggie :hug:

I think that anything that is having a significant impact on every day life and which is a result of dealing with this disease should be mentioned to the doc.

I'm sure that many people suffer from this to a degree but obviously for you, this is taking far too large a place and needs to be dealt with so that you can recover a happy balance in life.

I have only suffered from a relatively normal "reaction" to suddenly finding myself inactive, a little heavier and a lot less "toned" than I used to be. I wasn't comparing myself to others, just to me as I had been a couple of years earlier. As I say, for me it was relatively mild but even so, it does affect those around us and I understand the "unable to take a compliment" bit.

I suddenly stopped obsessing about all that when I had some relatively serious breathing problems and realised that prednisolone (the med we love to blame for all this when we're on it) was going to have to be part of my treatment very long term. The sheer fear with not being able to breathe properly suddenly put things into perspective for me. I then started listening to women all around me and realised that no matter how good-looking, thin, healthy, sporty and so on they were, they were all constantly only talking about diets and how to look better... it was quite a revelation and again helped me to leave that all behind.

I think that perhaps in your case, as it is obviously at another level, you may well need some type of counselling to help you with this as, from what you say, it sounds almost obsessive and that can be helped a great deal with counselling.

As I say, I think it is quite common and you really should talk about it either with your GP (if you have a good relationship of trust) or at your next rheumy appointment.

Katharine

 

[KarolH]

(((((Aggie)))))

I love what Katharine wrote here, she has such a good way of putting things into perspective and her writing style always makes so much sense. I agree that you need to mention this to your doctor and maybe there is something that can be prescribed, anti depressant or something for anxiety that can be of help to you.

There have been posts here in the past with others feeling the same way you do about themselves, one in particular that stands out in my mind and i am sorry I don't remember who posted it but this person did not even want to look in a mirror, very sad!!!!!

Many years ago my best friend was battling brain cancer and from treatment she lost all of her hair and her face was so swollen too. She was horrified at the person she had become and did not even want to leave the house. I went to pick her up to take her to the mall just so she could get out for a bit and she refused to go because people would make fun of her and she said she was ugly!!!:sad::sad::sad:

I explained to her that what is on the outside does not matter and does not define who we are as a person, it is what is on the inside, our morals, values, beliefs, etc....She proceeded to scream at me that I had no idea what it felt like to LOOK LIKE HER, a woman without hair and she told me until I was in the same place she was not to tell her how to feel.

So, Karol left her house, went home and proceeded to shave my head down bald................COMPLETELY BALD!!!!!! I got back in my car and went back to her house. When I rang the door bell and she answered she was totally shocked.:lol::lol::lol::lol::lol:

I said to her, "OUR HAIR DOES NOT DEFINE WHO WE ARE AS A PERSON AND WE ARE BEAUTIFUL WITH OUT HAIR TOO"! She could not believe that my hair was gone and she really thought I had lost my mind.

We went to the mall that day, ate, drank, shopped, laughed, sat on a bench and watched people and just had one of the best days together in our history of friendship. We had so many people stare at us, 2 women one of which was in a wheel chair, both bald as a peacock hanging out together. I told her that we would certainly be the topic of conversation at many dinner tables that night.

When my girlfriend was dying, hours before she took her last breath she thanked me for the life lesson I taught her and it was simple........HOLD YOUR HEAD HIGH AND LOVE WHO YOU ARE!!!!! We are not defined as a person by what is on the outside and when we die it is just a shell. The inside, our soul, who we are and what we did in life is what matters most.

My looks have changed drastically over the last 2 years and I am not the same person on the outside either but I am still Karol, a good woman, a great friend, a loving wife, an awesome mother, a care taker of my own mother and a sister too. To the people who matter most to me I am still loved and respected.

Hold your head high my friend and love who you are. You are so much to the people who matter most. I hope you can see my point and I hope it helps you to put things into perspective.

Please keep us posted as to how your doing as you move forward.:wink2:

 

[Aggie69]

Thank you, thank you both so much for taking the time to reply......even if you made me cry buckets. You truly are beautiful people on the inside!

Deep down I know you are right in what you are saying. I should be thankful just to be alive and I really hope one day I will be able to look in the mirror and accept the person I now am. I think this latest bout has been brought on by a flare up of my scalp on holiday. New hair that had started to grow came out over the lesions and I felt sheer despair at the thought of being back at square one again.

I know I need to get a grip because it's not only affecting me mentally, but also my relationship with my husband, family and friends. My husband tells me I am still beautiful to him and he would love and want me even if I was totally bald. He must get fed up when I tell him he is lying. As you said, this is the opinion of the most important person in my life so why should I worry about what others think.......and anyway, are they really thinking these things about my appearance or is it just my paranoia?

I had some CBT sessions a couple of years ago as my GP thought it might be helpful. This was before being diagnosed with lupus, so I didn't even know what I was dealing with. It was, however, of little use as I too continually quoted the phrase 'It's very easy for you (a slip of a girl) to be telling me how I should feel and act when you've got no idea what it's like to be in this position.' I just want to look like me again, not have to wear this stupid headband day in day out, be able to get up in the morning without dreading looking in the mirror, go out on the spur of the moment, be able to go swimming without fear of my make up running, be able to look people in the eye again, feel confident standing next to my beautiful sister, etc.....do you get my drift?

Anyhow, I will mention this again to Dr D'Cruz when I see him in November. Maybe he will be able to help further. Thanks again for the support. There aren't the words to express how much it is appreciated.