My Expectations of Living Well with Psoriatic Arthritis

By Cynthia Covert

2 min read

Once upon a time, my friends, family, and I had the same idea of what living well with psoriatic arthritis should look like. We all agreed that anything less than how I was living before my diagnosis was unacceptable. However, after many years of failing to achieve the said status of “living well”, our expectations grew further apart.

Explaining the differences in expectations of life with psoriatic arthritis

Even though this year will mark the 18th anniversary of my diagnosis, there are still friends and family who consider my life unworthy of respect or praise because how I live it does not fit their expectations of living well. Here are a few examples of how our expectations differ.

PsA treatment expectations

Friends and family expect psoriatic treatments to rid my body of all pain and symptoms. Experiencing a flare of any severity is a sign of that treatment failing.

I know better than to expect a treatment of any kind to eliminate the pain and symptoms I experience from psoriatic arthritis. For me, living well with psoriatic arthritis means having a treatment that reduces the level and severity of my flares. Flares are always possible, even with the best of treatments.

Physical expectations

To live well by friends and family standards, I would have to function like I did before chronic pain entered my life. That is to have no need for mobility aids or assistance of any kind.

While it is nice when my body cooperates, expecting a 52-year-old body that has multiple chronic illnesses and damage from two botched surgeries to perform as it did in her 20’s is both unrealistic and ludicrous. My definition of living well includes adapting to new issues, embracing tools and resources that make living with my chronic illness easier, and finding ways to pursue my passions that do not increase my pain.

Due to complications from all my chronic illnesses, I have had to use a wheelchair for the past year. To regain some of my independence I purchased a power wheelchair. While sharing how it has improved my life, a relative said “and when you no longer need it you can sell it”! Once again, I am reminded that not everyone accepts that I will never be the same.

Mental health expectations

Anyone who does not live with a painful chronic illness cannot possibly understand the emotional impact it has on our lives. With that said, there are some who think I should be in a constant state of depression. It is their opinion that no one in their right mind could find joy in living with the pain that I do.

I am so thankful that we disagree on this point. While it is true that living with psoriatic arthritis can be depressing and maddening, my body’s lack of ability does not define me. I have many outlets, hobbies, and passions that bring joy and purpose into my life.

How have your expectations changed? Do your friends and family share your expectations?

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.

Join the conversation

Please read our rules before commenting.

ralphcook Member
 Cynthia Covert, do you eat animal products? Meat, Dairy, Eggs? These three "foods" promote inflammation. If you stop eating them, this will deduct from your diet the major causes of inflammation in your body. It won't cure your condition - I've not eaten these foods for 42 years and I occasionally get a flare up (I have one now due to having Covid back in April) but ceasing to eat these "foods" generally does assist people suffering inflammatory illness/conditions. Do not expect immediate improvements, it takes months before things begin to change especially as you have probably been eating these items for nearly 50 years. Give it some thought and if you want to know more, just get in touch, although I am not by any means an expert and do have plenty of experience in regard to psoriatic arthritis and diet. 
1. Vickie Wilkerson Moderator & Contributor
 Hi @ralphcook thanks for responding by telling what has worked for you. Please know that everyone is different and what works for one might not work for another. Sorry to hear about your flare but certainly glad you made it through having Covid. Vickie W., Team Member
ralphcook Member
Of course I know everyone is different but I also know that animal products are inherently inflammatory and that applies to everyone who eats them. Individuals may not respond to these unhealthy attributes of animal foods in the same way but no-one knows how they respond until they experiment with either adding animal foods to their diets, or removing them. That is why I wrote what I did. According to my diagnosis, I have one of the most active and deeply entrenched forms of psoriatic arthritis. As such I would expect to be in a very bad way right now. Indeed, when I was diagnosed (as late as age 35 in my case), I was told I should expect to require a wheelchair within a few years. Only last year have I started to use an electric buggy when I visit a nature reserve that sees me regularly. Compared to the stories I read of pain and suffering on this forum, I am doing very well, although my disease almost killed me in 2013 with an aortic dissection in which my life was saved thanks to a 12 hour open heart surgery (and apparently because my arteries were virtually clear of cholesterol - a result of my diet). Finally, I am not entirely convinced that being vegan is for psoriatic arthritis that I wish it to be, that is why I am encouraging people to consider it as a potential means of addressing the condition. Its benefits or otherwise as a treatment can only be established by fellow sufferers taking the plunge and giving it a try. If just 20% of people responded positively after changing their diet, doing so would recommend itself as a treatment and the lives of many thousands of sufferers would be enhanced. As far as I can determine, no-one is looking at dietary choice as a major element in treatment and most of the focus of research is upon expensive drug treatments, all of which carry significant risk of adverse, long-term side-effects. This is a huge over-sight and ought to be addressed with a study of the effects of diet on the condition. Regards Ralph
1. Lori.Foster Community Admin
 Hi <inline-mention username="ralphcook" user-id="3306790"/>! Kuddos to you for sticking to the diet all these years! That can't always be easy. It is interesting to see what helps different people. Sometimes, we have sensitivities we are not aware of or we learn that allergens are in foods we hadn't considered. For instance, I am allergic to mold. I have always been careful to take my allergy medicine on high mold days and keep the windows shut on summer nights. But, in all these years, it had never occurred to me that cheese could also be a culprit. Most cheeses are mold-aged. The mold is cut off when it is ready, and then it is packaged and sold, but traces of that mold remain in the cheese. I stopped eating cheese a few months ago simply because I noticed I felt better without it. Later, I learned about the mold connection. Some foods seem to cause inflammation in everyone and others are particular to the individual due to allergies or sensitivities, so it can be helpful for anyone to try an anti-inflammatory diet for a while. Poor health puts stress on the body and stress can aggravate symptoms, so that's another reason to eat a healthy diet. I do wish researchers would do some long-term studies on the PsA-diet connection, but dietary studies are always tough. There are often too many outside factors that influence the outcomes for researchers to reach scientifically acceptable conclusions. So it can be helpful when people like you share their hard-earned wisdom and experiences. Best of all wishes! - Lori (Team Member)
ralphcook Member
Yes, you are so right. And I had never thought about mold being the culprit in cheese. My understanding is that milk, yogurt, cream and cheese have differing affects on people who are sensitive to inflammatory foods and now I'm wondering whether mold might well explain why cheese is considered the worst at promoting inflammatory responses. Red meat is implicated in a different way, apparently most people's immune system recognises a chemical in animal meat as a foreign body and treats it as an alien invader, sparking an inflammatory response. Regular consumption of red meat is linked to cancer and this might be the reason. Eggs are considered repositories of an alien cholesterol so they promote inflammation as well. I do not find any of this surprising because most human beings have never eaten meat regularly, between 10,000 and 100 years ago only the wealthy elite could afford to eat meat regularly and they suffered the consequences: Henry VIII is a prime example, his obesity and cardio vascular disease was likely the result of eating copious amounts of meat. Since about 1920 gradually more and more classes in society began to eat meat several times a week and then the epidemic of disease we see in western societies began to emerge. Dairy has also been consumed for no more than 10,000 years and again the elite had more access to it from the beginning of agriculture than the poorest in society. Large numbers of eggs have been consumed by most classes of society for much less time. I know all this because I'm an amateur historian with a particular interest in the history of human consumption of animal-based products and I've been writing a book on the subject for the best part of ten years having begun researching the material for the book about 40 years ago. I'm hoping to self publish later this year / early next year.
1. ralphcook Member
 <inline-mention username="Leanne Donaldson" user-id="3312035"/> I expect your husband has done his research but the human body, thanks to millions of years of evolutionary adaptation is far more vegetarian than it is carnivorous> A 100% meat diet is dangerous, in the short-term it can cause rabbit starvation if it consists largely of protein and very little fat, slightly longer term scurvy can result from a lack of vitamin C and there are other complications in the short to medium term. Proper long term a 100% meat diet has a high chance of leading to cancer. The link is a popular science media one, if your husband is more interested in the science he ought to Google Colon cancer and meat-based diets. There's plenty of actual science on this. Finally excessive meat consumption is dangerous for all humans, this is not an example of merely different tolerances. The weight loss and feelings of great health are reported by many who are doing what he is doing. The sickness and the ill-health will follow in due course. Homo sapiens have millions of years of vegetarian living behind them. Very few of the total number of humans who have ever lived in the last 300,000 years have lived exclusively on animal flesh, by far the most hardly ever ate meat at all. Our bodies are not evolved for this kind of diet. I suggest your husband takes a close look at the human digestive tract to see the evidence of this. He definitely should not be getting his information from the sites promoting this kind of diet. https://www.popsci.com/carnivore-all-meat-diet/
2. minelcannucciari Community Admin
 <inline-mention username="ralphcook" user-id="3306790"/>, thank you for sharing your perspective. I agree that there can be concerns about following certain types of restrictive diets. It’s a good idea for everyone to do their own research and work with their doctors and registered dietician to find what may work best for them and their health goals. Everyone is different! Thanks again for sharing your experiences. Best, Minel (Team Member)
Diane T Moderator & Contributor
Hello Cynthia, so many great comments. You guys are a wealth of knowledge. It brought up some great conversation. I have had psoriatic disease for 60 years and I am always learning something new. Thanks for sharing. Diane (Team Member)