How can I explain PSA to my older brothers (77 and 80, both still active) and friends?
Can someone please tell me how to explain to my family and friends what psoriatic arthritis is and how it is limiting my life? They either don't understand at all or they brush it off with, "Oh, everyone in our family has arthritis." Friends continue to ask me to do things I did before but can't do now, like go for a walk or spend a weekend camping, walk through an art fair on a hot day, etc. Two years ago I was fine. I was 68. Now I am 70, have full-blown PSA, am needing to use a walker to walk more than a block, am in constant pain and not sleeping well. It's not 'just arthritis." How can I explain it? It came on like a tornado a year and a half ago and never let up.
Hello
, I'm so glad you reached out. I'm sorry to hear that on top of your PsA symptoms you are managing the expectations and misunderstandings of family and friends. You bring up a common struggle within the community about how sometimes family and friends of those living with PsA do not understand or dismiss the realities and impact of PsA. Some people have found sharing information from doctors, or even sharing articles from here, helpful in getting others to better understand the lived reality of managing PsA. I'm not sure if it would be feasible for you to share some information with your family, but we do have this article about the difference between psoriatic arthritis and osteoarthritis, https://psoriatic-arthritis.com/clinical/osteoarthritis-vs-psa-differences. People unfamiliar with psoriatic arthritis hear the word arthritis and can sometimes make assumptions. Some of our community members have also found that explaining psoriatic arthritis as an autoimmune and inflammatory disease can help others understand that it is very different than the wear-and-tear of osteoarthritis. Please know that this community is here for you. And hopefully your family and friends can be a little more open to hearing about your experiences and pain and what that means as far as your limitations and impacts on your day-to-day life. Sending you gentle hugs. -- Warmly, Christine (Team Member) As promised here's a continuation of my earlier reply. I tend to tell sceptics about other people who have or had psoriatic arthritis, for strange reasons the disease appears real when someone other than a friend or family member is diagnosed with it. Other sufferers include celebrities, such as Kim Kardashian West, Stacy London, fashion expert and former co-host of What Not to Wear, and Dax Shepard, actor, writer, and director, CariDee English, winner of America’s Next Top Model, LeAnn Rimes, a singer, has managed severe symptoms of psoriatic arthritis, throughout her life, Cara Delevingne, model and actress. Among historical figures who seem to have had the condition are Joseph Stalin! So having told your family and friends that this condition is real by reference to famous people who have it today. The next step is to explain what it is. Here we go - “I’ve got something called psoriatic arthritis. It’s an autoimmune condition - basically my immune system gets confused and starts attacking my own joints and often my skin. It’s not caused by anything I did, it’s not contagious. It’s just one of those things that happens to some people due to genetics. It’s a genetic condition, it runs in families, Kim Cardashian's mother had it. You can’t ‘catch’ it - you’re born with the tendency for your immune system to behave this way. It comes and goes in flare‑ups. Some days I’m fine, other days my joints swell, hurt, or stiffen. It can be unpredictable, which is frustrating. There’s no cure yet and it is likely that there never will be one. Doctors can treat the symptoms and calm the immune system down, but they can’t completely switch off the condition. Treatments help some people more than others. Modern medicines can reduce inflammation, but they don’t always work perfectly, and sometimes they simply stop working. There aren’t really natural cures. Some things like stress reduction, sleep, gentle exercise, and avoiding triggers can help a bit, but they are thought not to reliably replace medical treatment. Some people claim changing the diet helps, especially eliminating all inflammation promoting foods such as animal products - meat, dairy and eggs, processed foods and similar but at present insufficient studies have proven these strategies to be effective. It’s just something patients have to manage long‑term. I’m still me — I just have a body that occasionally behaves badly. Hi
, looks like I responded to your other comment before seeing this one! Thank you so much for sharing your whole spiel on PsA. I like the way that you incorporate famous people to help others understand that this condition is very real (although I wish nobody needed convincing of this). You go into enough detail for people to get it, but not so much as to overwhelm. Hopefully your friends and/or family have found this explanation to be helpful in giving you support and understanding you deserve. We really appreciate you sharing this all here. -- Warmly, Christine (Team Member)
I was diagnosed following a blood test in 1995. Before then, I occasionally experienced mild symptoms that I ignored out of ignorance. After the diagnosis I carried on as before, coping with the irritating consequences of occasional flareups. In 2013 I experienced a serious event that should have seen me go to my grave. I survived an aortic dissection and separating aortic valve by the grace of a Hungarian surgeon's skill, although he said he couldn't have saved me if I'd had the arteries of a typical 54 year old British man (I've been a vegan since I was 19 years old and as a result almost zero cholesterol clogging up my arteries). I asked him what had caused my problem and he said it was significant levels of inflammation that my periodic blood tests show had been present in my system for about a year. He couldn't explain what caused the inflammation but my subsequent research has revealed the likely cause was related to reduced immunity due to stress caused by me being sacked by my employers under circumstances that were wrong and unjust. Then in 2020 along came Covid and that kicked off the last six years of increasingly significant health problems - my bone strength and integrity reduced, a bacteria has colonised my heart, my muscles are weakening, I suffer from repeated bouts of diarrhoea, both my feet have broken, my skin is covered with psoriasis, my finger and toe nails are yellowed, thickened and distorted, lumps appear in my skin, I cannot walk, drive or fend for myself. I have gone from a relatively fit middle-aged man who toured Italy for three weeks in 2019 into a bedridden wreck thanks to my immune systems distorted way of responding to Covid and before that, stress. This is not arthritis. All my blood work from 1995 has consistently shown psoriatic arthritis as my only condition and all my vital signs as excellent. Indeed even after my 2013 heart problems, I used to tell friends I had the body of someone half my age and this was confirmed by all the tests and examinations I've ever had. Then things went belly up. My friends ignore the facts and point to my diet as the cause of my troubles because that suits their bias and it's easier to leave your brain in a basket when dealing with a complex topic like psoriatic arthritis. Thus, I have had to confront the task of explaining to people who think they know what lies behind my condition what it is. And the task is difficult. But there is a simple approach that I have come up with and I'll tell you what it is, after I have eaten my dinner which has just been delivered unexpectedly early.
, what a challenge going from such a healthy and fit person (so much so that you survived the aortic dissection and separating valve) to your current health struggles. I can hear how frustrating things have been for you since 2020, especially when you're tasked with explaining to friends who think they know your body better than you do. Please know that this community is here for you! We look forward to hearing from you when you are available to what has been helpful in your approach. We appreciate you taking the time to share here. Wishing you a gentle day. -- Warmly, Christine (Team Member)
