Ask the Patient Leaders: The Overlooked Aspects of PsA

By Psoriatic-Arthritis.com Team

2 min read

You may be familiar with the term “invisible illness.” It’s a common term used to describe chronic conditions that are not outwardly visible to family, friends, partners, and even healthcare professionals. Psoriatic arthritis (PsA) can most certainly be described as an invisible illness.

Too often, PsA is compared to rheumatoid arthritis or osteoarthritis. In fact, PsA is a unique condition with a lot of unique symptoms. When others dismiss its invisible impact, it stings.

You may find yourself feeling unseen, defensive of your unique symptoms, and faced with chronic pain adversity. All of this comes on top of managing the condition itself.

Psoriatic arthritis patients share . . .

So, what can you do? You can make your mess your message. Our Patient Leaders are committed to doing just that. They want to amplify the unique challenges of managing life with PsA – especially the overlooked symptoms that classify PsA as an invisible illness.

You have been invalidated and unseen for far too long. In the video below, our Patient Leaders to describe the unique effects of psoriatic arthritis and the emotional impact of those overlooked symptoms.

This PsA Awareness Month and all year long, the intention of Psoriatic-Arthritis.com is to promote better understanding of PsA. Our goals are to erase stigma and prioritize treatment research. You are always welcome here, any day, at any comfort level.

You won’t be overlooked here

You are a person before a patient. And when it comes to managing life with PsA, your experience matters. Its value echoes through the words of Cynthia, Jaime, Vickie and Porscha.

If you have a question about PsA, it may have been asked before. Check out our forums. If you can’t find what you’re looking for, we encourage you to ask the question there.
Are you feeling inspired to share your unique experience with PsA? Want to vent about a particular interaction or frustration? Consider sharing your story.
Prefer to just lurk and read about PsA? Our curated newsletter would be perfect for you. Sign up here.

Wherever you are in your PsA journey, we see you, we welcome you, and we thank you for being here.

This or That

Do you know what type(s) of psoriatic arthritis you have?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Dewi Member
I suffer from psoriasis in areas such as scalp, eyes, ears, throat, stomach, genitals, legs, hands, legs and urethra. The last is the most painful & it's the one Drs do not believe is possible, the pain when I urinate is excruciating. I also have PsA...
JamesWBA Member
Not sure about overlooked, but I think the variability of symptoms can be very hard for others to grasp. Eg I have one colleague I was discussing my symptoms with one day, and I was complaining specifically about pain in my hands. Now, she often asks me how my hands are, though I might be more bothered about another area. The same goes for the fact that you can be in less pain one day and more the next. That can also be tough for others to understand.
ralphcook Member
The most overlooked aspect of psoriatic arthritis is also the aspect that I detect has the strongest resistence from individuals suffering from the condition. Diet! If you consume the typical American diet and you have psoriatic arthritis you can expect to suffer. I have been vegan for 45 years. When I became vegan I had no idea I had the condition and I was barely aware that I had gone through my childhood without experiencing any of the childhood illnesses that afflicted my sisters, Aged 35 I had my first attack I had been a vegan by then for 16 years. 1996 was a bad year for me with a great deal of stress experienced during the previous 24 months at work and more to come until my elderly mentally deteriorating grandmother who I was a primary carer for died in 1998 and things became a lot easier in 1999. Ill from IBS and suffering arthritis-like symptoms, I discovered thanks to a blood test that I had psoriatic arthritis in 1996. I knew nothing about the disease, continued as usual continued being vegan, cooking my delicious meals and running my own picture framing and rental business. My doctor referred me to an arthritis and rheumatology specialist and dutifully I attended her climic every six months for about five years, now I just have the occasional annual checkup, interrupted by three years of Covid problems. In 2003 I believe I contracted SARS-COV1 which seems to have crossed the globe and been passed from person to person without apparently causing symptoms. I had a resurgence in my arthritis-like symptoms but like in 1996 they soon dissipated. My real problems began in 2013. At an important regular meeting with some high-powered folk I sustained an aortic dissection and it was only the speed with which I was delivered to an operating table and the fact that the surgeon had dealt with a previous aortic dissection patient (who unfortunately died on the operating table) that saved my life. I was led to believe that I should enjoy life because aortic dissection survivors (few in number as they were) never survived beyond five years. I'm approaching ten years now. The surgeon told me it was the "lack of cholesterol in my arteries that saved my life and despite being somewhat confused I suggested that was probably due to my diet. I noted his raised eyebrow and told him I'd been a vegan for over 35 years. "That'll be it" he said as if he'd been uncertain about something earlier. The aortic dissection occurred in December 2013. Exactly 2 months later I was on an airplane flying to Germany to spend a month recuperating with my German partner. On my return in March I built in three months a 25 foot workshop and a conservatory along the back of the house, from wood cut and fixes into place by me. I was 55 years old then and my friends were worried. I visited my doctor and he said after open heart surgery 6 months complete rest was usual and sometimes a year was necessary before a person went back to work. I was fine then until I collapsed and broke my leg in November 2016. I recovered from that within 6 months which rather discredits arguments about the vegan diet and bone weekness. Enough was enough and I sold my businesses, got myself out of my professional responsibilities, my partner moved in with me and we entertained ourselves visiting nature reserves in the UK and visiting Germany regularly. I was on top of the world. Then I caught Covid in March 2020. The symptoms were short-lived in my case, I cared for my partner for three weeks whilst she was ill in bed. Three months later I began experiencing all sorts of strange symptoms and gradually by the end of the year I had a suspicion that Covid had provoked my trusty immune system into attacking my body. I got Covid again in April 2021, again in March 2022 and again in about late March this year. In 2021, I spent 3.5 months in hospital being treated for a great variety of strange conditions. Right now I am desperately worried that I shall be leaving my partner one way or another. The idea of killing myself is never far from my mind, sometimes I am tearful and others upbeat. I am not frightened of death but I don't want what I've got now, the feeling that my remaining life will see me worsen month by month as I drift towards death. I should have died in hospital last year but it seems my diet saved me once again. I recommend that anyone experiencing the effects of psoriatic arthritis and anyone diagnosed with the condition immediately put aside that diet of meat, dairy, eggs, sugar and salt and go vegan. Try it for a year or two, if it doesn't work go back to your old ways. But if you are serious about conqueroring psoriatic arthritis, vegan is the way to go.

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