Hi, I was formally diagnosed a week ago, but have been dealing with the symptoms for more than a year. I guess my question for those that have been going through this a long time is do you ever feel like people just assume your faking or making it a bigger deal than they think it is? I look fine on the outside, but have been in real pain for months. I feel like my family thinks I'm making it up. How do you deal with this.
Also, I was very active until I started having problems with my knee and hip. My doctor asked that I limit my exercise to swimming and biking because they are better for my joints. Does anyone have any tips for dealing with the psoriasis and chlorine? I want to start swimming more, but have had some problems in the past with the chlorine.
I don't have too much to add other than maybe getting your family to come with you to the doctor, give them some pamphlets, or send them to a website with good information on PsA. It's always difficult to deal with people who don't understand, but hopefully with some education they may get it a bit more :). As for the pool, have you tried looking for a salt water pool in your area? I seem to recall salt water being good for psoriasis. If not I think there are some lotions you can put on your skin to help block out the chlorine? Sorry if i'm not making sense, I have a bit of a medicine "hangover".
Hi Chicagogirl. Yeah, I got many stories to tell. I worked in a hospital and one nurse who acted like I was nothing but a big liar and faker with my P.A., actually went so far as to try and keep me from leaving early on the days I was hurting badly. My bosses were ok with it, but she had a wild hair concerning me. I also have Crohn’s disease, so the days I could leave early were a Godsend.
I, too, look fine on the outside. It’s like the world needs to see some outward sign of our pain in order for them to be satisfied. It is very frustrating. I have been dealing with the P.A. part for 7 years now. I can empathize.
Sorry, I don’t like swimming so I don’t have any tips on how to deal with psoriasis and chlorine.
Shower immediately after swimming and apply a good coat of eucerin or your favorite cream to the thickest areas, apply a thinner lotion or oil to the rest of your body. Don’t swim if your psoriasis is really tender and cracked. Thick scaley plaques are ok, but no broken skin in the pool. Ewwww. Make sure to get a suit that covers most of your plaques. Lifeguards and fellow bathers can be idiots, so covering up can save you some hurt feelings and righteous anger. Try to wat on swimming until you can get your skin somewhat under control too. Chlorine can really dry your skin out and make you feel worse. Make sure you take good care of it.
Ahhh, people are so infuriating. Initially, it is good to try to educate your family about your disease. Let them know as matter of factly as you can, and try not to get emotional about it. Send them to the National Psoriais Foundation website psoriasis.org, or NIH. Both are good resources for family members. You can also send them to this site and have them read some of the discussions. I don’t know how bad your symptoms are, but do share what you feel. Don’t be a whiner, but let them know when you are having a rough time. My family and I have a code. I hurt every day, but some days are worse than others. When they ask me how I am and I say that I am great that means its a good day with no extraordinary pain. A bad day, means that I am really suffering and will need help that day. You might also try describing your PsA by having family members read, “The Spoon Theory” http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/. It’s a really accurate description of how I feel a lot of the time. As time goes by, people close to you will start to understand what is happening to you and how you are feeling, changing, etc… Some people will never understand and won’t try to either. You have to learn to let that go. You won’t be able to educate every single one, and not everyone will understand anyway. Focus on the people most important to you. If they refuse to understand through pure pig-headedness, you have two choices:either drop them like a hot rock, or accept them for what and who they are. Choose whichever option gives you the most peace.
Hopefully, now that you have an official diagnosis that says that this IS real, your family will begin to come around as well.
Thanks for the advice. I'm going to check into that.
Emma W said:
I don't have too much to add other than maybe getting your family to come with you to the doctor, give them some pamphlets, or send them to a website with good information on PsA. It's always difficult to deal with people who don't understand, but hopefully with some education they may get it a bit more :). As for the pool, have you tried looking for a salt water pool in your area? I seem to recall salt water being good for psoriasis. If not I think there are some lotions you can put on your skin to help block out the chlorine? Sorry if i'm not making sense, I have a bit of a medicine "hangover".
I feel your pain. My partner tries to understand, but I have 2 terrible 'unseen' diseases, the other being Bipolar. Every day is a struggle with people not believing anything is actually wrong. Good on you for trying to remain active. All I can suggest is showering and moisturing as soon as you get out at the pool, don't wait until you get home.
For the pool, see if you can get “barrier cream” and put it on before you go in. It’s something that mechanics and others who work heavily with their hands use, you can get it from either pharmacies or hardware stores here in Aus. . When you get out, use your normal soap to wash it off, then apply your normal cream or moisturizer to the Psoriasis patches.
I had a really bad dermatitis reaction (cracking and bleeding all over my hands) to a certain type of water I had to work with, the barrier cream made an enormous difference.
I'm sorry for your pain. I understand how devastating bipolar can be. My father had the disease. He was diagnosed back in the late 70s early 80s. I remember people telling him to just suck it up. I have to admit it took me a long time to understand as well. All I can say is that you have to be as honest as you can with your partner and stay on your meds. Good luck.
SadPsoriaticSarah said:
I feel your pain. My partner tries to understand, but I have 2 terrible 'unseen' diseases, the other being Bipolar. Every day is a struggle with people not believing anything is actually wrong. Good on you for trying to remain active. All I can suggest is showering and moisturing as soon as you get out at the pool, don't wait until you get home.
