Does Anyone Else Have Problems With People Not Understanding What Psoriatic Arthritis Is?
I'm sure most of us have heard, well at least it's not cancer, or say chin up or it could be worse. This is the time that you find out who your real friends are. One of my really good friends thinks that it is most unfair that I don't have to pay to park because of my handicapped sticker.
Don't people know that we would love not to have that placard? What have some of your friends or family said to you that you didn't like? We would like to hear from you. Diane (Team Member)
Hi there,
I’m Kenneth, and I’ve been dealing with symptoms of Psoriatic Arthritis for the past month. One thing I’ve noticed is that many people don’t fully understand what Psoriatic Arthritis is, which can be frustrating. I’ve done a lot of searching for a cure but haven’t found one yet. However, I’ve learned that managing the symptoms and improving quality of life is definitely possible. Connecting with others who have the same condition and consulting with experts has been incredibly helpful. So, if you’re in the same boat, remember that it’s manageable, and you’re not alone in this.
Take care!
I regret to tell you there is currently no cure. I do know that the National Psoriasis Foundation is giving grants to researchers to come up with a test that will say it is psoriatic arthritis so that so many people do not have to wait a long time to get diagnosed. Sounds like you are on the right track with your research and managing the symptoms. Vickie, Team Member , thanks for chiming in. I have had psoriatic disease since 1963. Amazingly, we have communities that understand what we are going through. This is why I try and let my voice be heard. It's hard to explain to someone that you can't get out of bed or use your hands. I have been called lazy so many times that at one point I thought that was my name.
It's good to hear that yours is manageable. This is great news. I have a stream of doctors and one day I will get there. What are you doing to manage your symptoms? We would like to hear more from you. Diane (Team Member)
Diane I fully understand your frustration when it comes to friends/family not understanding what it’s like to live with PsA. My favorite comment was from a long time friend whose reaction to my diagnosis was: “Oh, isn’t that the disease that has all those tv commercials for all those new drugs? You have so many drugs you can try! You’ll be fine!
Yeah. Right. Needless to say, I’ve never discussed it with her again.
MaiaHello
, I do believe that one day people will understand that it's not the same disease that your grand father had. I'm with you. How many times can I tell you the same thing over and over again? Thanks for sharing. Diane (Team Member)
Yes. Most people don't understand what psoriatic arthritis is. Sometimes you have to explain it may times, as there are said where you look and feel fine
I think it is those times when we look and feel fine that people see and do not know how to take us when we are not. Vickie, Team Member
I once got told that 'it has been eight months, get over it' after having a very bad day. It took me a couple of weeks to be able to look at that person again. I think what made this so much worse is that the person who said this to me has a child with an autoimmune disease. Of all the people, I thought that she would understand best.
what a great way of trying to explain in a way that might help someone actually get it. While this isn't the case for everyone, I do think a lot of people seem to need to be able to relate it to themselves to understand. Of course, it goes without saying that it isn't the responsibility of the person living with PsA to go through the mental and emotional work of trying to get people to understand. I do appreciate you sharing the suggestion of comparing it to something people have had themselves! And hopefully that has made people gentler and more understanding with you also! -- Warmly, Christine (Team Member) Oh how I wish I could share my tips and tricks! But I think currently I am just reacting a bit better to my meds. My husband is also an amazing support. We are also in the Southern Hemisphere and summer is in full swing. I think that, along with the knowledge that in a few short weeks I will be relaxing on holiday is helping me cope better. How are you doing? Is the fatigue bothering you more lately?
