being ignored

[pamala1]

Hi, my name is Pam and I am new to this forum, although not new to psoriasis. I guess I am considered moderate psoriasis and nothing I have
used, as in topical stuff has helped at all. So, needless to say, it keeps spending. I don't get much support from family. My husband thinks because he can't fix it, he'll ignore it and my concerns about it as well. Does anyone else have this reaction? Today, I am going to try and see my dermatologist again. We've talked about more invasive treatments, so maybe I am ready for the injections or pills. Thanks for listening and wish me luck. I am really glad to know I am not alone it all of this. Thanks for being there.
Pam

[ouchyk]

Pam,

Good luck at your appt. Please let us know what treatment you choose. Have you considered light treatments? Just a thought.

Be well,
Karen

[chaimFL]

To be honest Pamela, I wish my wife ignored me when it comes to my psoriasis. For a while my wife used to ask if I had done my treatment and if I was lazy that evening and said 'no' she would ask why. As far as I am concerned I just want to be left to take of my psoriasis myself and in my time frame. I guess when we experience the extremes of the spectum (total ignorance vs. nosey) the other side looks more appealing.

[Manders]

I don't get much support from family. My husband thinks because he can't fix it, he'll ignore it and my concerns about it as well. Does anyone else have this reaction? , I am going to try and see my dermatologist again. We've talked about more invasive treatments, so maybe I am ready for the injections or pills.
Pam

Hi Pam, and WELCOME! I dont get support from my family either, I really feel since they dont understand, or care to understand the problems with psoriasis, and hurt it causes, they feel like its just another thing that will come and go. Or maybe go away forever. But the reality is its here to stay.

My derm. talked to me about injections, but I found they are not for me considering I have cancer and psoriasis, injections will most likely cause more problems.

I wish you luck! and hope you find a solution that works well for you, I look foward to seeing you post more! We're all here for you! :)

[RichJ]

hi pam,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[emarie]

I m fairly new to the group as well. I talk to my husband about what I am feeling, and apologize for the milllions of flakes all over everything. I have moderate to severe psoriasis. It is more severe on my scalp, but lesions are all over. I have photoherapy three times a week, which I started in July. All but a few lesions are lierally gone. The last few are almost gone. You get a great tan to boot. I am now taking Methotrexate which we hope will help with the scalp. So far not. I wish you well. Let us all know how you make out. I found that explaining what the disease is, how it is affecting me, etc. to my husband helped a lot. He now vacuums the flakes all the time, and helps in any way he can, even if it is to just be there. Sorry for the long winded reply.

[PJ Leary]

Hi Pam,

Welcome to the boards. This is a pretty cool place for helpful information and support. Psoriasis is a tough disease to live with, especially when it is severe and difficult to treat like yours. I have some thoughts to share with you.

I've had severe psoriasis all of my adult life. Especially when I was younger, I often had the same kinds of feelings you describe about not getting support from my family. Not my husband, but certainly my mother and siblings, other family members as well.

One thing I came to understand about myself is that I unconsciously contributed to that. Psoriasis patients are notorious for minimizing their disease and symptoms, both to themselves and to others. We don't want people to think we are complainers or whiners ( who likes a whiner, after all ? ). If we aren't careful, that very additude can cause us to feel even more isolated, which can lead to feelings of resentment and anger.

I went to a medical counselor when I was in my early 30's, and had a remarkable revelation. I discovered that I mentally divided people into two categories, the " we " ( who have psoriasis and therefore understood ), and everyone else was "they". Oh my, the group of we was literally a group of 2. The they group was soooo much bigger. I came to understand that not only was that unhealthy for me, but it was quite unfair to the whole they group. I had written them off without really given them a chance. I had done all of the negociating in my own mind, without their participation or consent. To make matters even worse, I never even bothered to inform any of them that I had done so. Talk about arrogance! Or, more likely, fear.

Fear of being rejected or misunderstood when being honest. So, I decided to begin telling the truth, but in very small doses. If someone, anyone asked me, " How are you? ", I would answer with a one line truthful sentence, and then inquire about them. End of topic about me, but just a little truth. Like, " I am having a really bad itch day", or " My joints are killing me in this cold weather from the pa ". Then again, I found I could often say things like, " I am really having a good day, I love these sunny days ".

The key is to listen to the answer. I am not saying it is always appropriate to practice this, but it is a good way to let others who are in your life frequently know a little more about you without overwhelming them with information or whining, being too needy. Just state a fact, and keep it at one, for good or not so good. After all, you don't have much control about your physical condition, but neither do they.

Talking with others who have this disease can help too. Maybe you can fill some of your need for empathy that way, and then need less from others.

Hope that helps some.

Regards,

[jojocat]

It used to be when I would decline an invitation, I would be nonspecific as to why. Now I show and tell if possible and explain thoroughy. My best girlfriend saw all my medication bottles and I shook out a pill and explained what each one do. I think it gave her a new appreciation. I hope so anyway.

[grannyfranny]

I got the brochures from the NPF and had my DH and kids read about psoriasis. It helped them understand more about what this is and why it will not go away. Education from someone other than the patient will help.