The Hidden Reality of Psoriatic Arthritis

A notebook that says Dos on one side and Don'ts on the other.  The "do" section says "Advocate for yourself like your life depends on it -- because sometimes it does.   On the "don't" side it says "Don't let a doctor who isn't familiar with your condition gaslight you into thinking it's no big deal!

People with Psoriatic Arthritis (PsA) often wake up so stiff that they are barely able to move. Some people require assistance just to get out of bed in the morning. It is not “arthritis” in the way most people think of arthritis, such as the wear-and-tear arthritis many older adults develop with age. A more accurate medical description would be an autoimmune inflammatory spondyloarthropathy rather than simply “arthritis.” That wording helps people understand that it is a systemic inflammatory disease, not just age-related joint wear and tear.

Since the word “arthritis” can be misleading, many doctors and organizations now use the broader term “Psoriatic Disease.” And just  in case you are wondering, it is possible to have Psoriatic Disease without having obvious or active psoriasis at the time. For some people, visible psoriasis appears later in the course of the disease, while for others it may only become active or noticeable during certain periods of their lives.

Most doctors and researchers believe Psoriatic Arthritis and Psoriatic Disease are caused by a combination of genetics, immune system dysfunction, and environmental triggers. In simple terms, the immune system becomes overactive and mistakenly attacks the body’s own tissues, especially the joints, tendons, spine, skin, and the areas where tendons attach to bone.

There is also a strong genetic component. Many people with PsA have family members with psoriasis, rheumatoid arthritis, autoimmune diseases, or other inflammatory conditions. Certain genes, especially HLA-B27 in some patients, are associated with more spinal involvement and inflammatory disease.

There are also triggers that may “switch on” the disease in someone who is genetically predisposed. These can include:

• Severe stress or trauma
• Infections, especially strep infections
• Illnesses
• Physical injury
• Hormonal changes such as puberty, pregnancy, perimenopause, or menopause
• Sometimes surgery or major illness

Psoriatic Disease is not caused by aging, “wear and tear,” laziness, lack of exercise, poor diet, or simply “getting older,” even though many people still misunderstand it that way. While there are medications that help many people, some can come with serious long-term side effects for certain patients, including increased infection risk, kidney issues, gastrointestinal problems, fatigue, or cognitive side effects often described as “brain fog.”

Many people with Psoriatic Arthritis put off trying medical treatments because of concerns about side effects and because they fear the medications will completely destroy their immune system and leave them vulnerable to every illness around them. That is not exactly how these medications work.

With PsA, the immune system is overactive and mistakenly attacks the body’s own tissues. Many of the medications used to treat PsA are designed to calm parts of that overactive immune response and bring it closer to normal levels.

Yes, some of these medications can increase the risk of certain infections, and doctors do monitor patients carefully for things like tuberculosis and other opportunistic infections. However, taking these medications does not mean someone will automatically catch every illness they are exposed to or need to live in complete isolation out of fear of getting sick.

In addition to NSAIDS, DMARDs, and biologics, the thing that helps the most is gentle movement, even though movement can be extremely painful at first. It does not have to mean walking a mile or doing intense exercise. Simple walking, stretching gently, and moving around the house can help as much as anything else.

Doctors often use morning stiffness as one way to gauge how active PsA is. If stiffness improves within about 20 minutes, it is often considered milder disease activity. Stiffness lasting around 45 minutes may suggest moderate disease activity. Stiffness lasting longer than 45 minutes can point to uncontrolled disease or a significant flare. The key is to keep moving, even when we are stiff, exhausted, and in pain.

We often wake up exhausted before the day even begins. Simple tasks like showering, getting dressed, brushing our teeth, holding a phone, brushing our hair, typing on a computer, opening jars, or even walking can become painful during flares. Even so, there is no choice except to keep moving when we first wake up and then rest when needed throughout the day.

The stiffness and pain also become worse if we stay in one position for too long. Things like long car trips, air travel, standing in line, sitting at a desk all day, or even staying in bed while sick with something like the flu or COVID can significantly increase stiffness and pain. Getting too cold or sitting directly in the path of a fan or air conditioner can also make the stiffness and pain worse.

We learn to keep smiling and showing up for others, even when we are quietly struggling with pain and fatigue, because living in complete isolation can sometimes feel even worse than the pain and fatigue. After a while, friends and family sometimes begin to expect this from us, even during severe flares.

But there are also times when we simply cannot do it. We cannot shower. We cannot cook. We cannot open jars or cans. Sometimes we cannot even walk safely because the stiffness, weakness, pain, or fatigue make us too likely to stumble and seriously injure ourselves.

Why do we push through the stiffness and exhaustion? Why do we say we are fine when we are anything but fine? Because what kind of life would it be if all we ever did was talk about pain? We still want friendships, relationships, laughter, normal conversations, hobbies, and experiences. We still want to participate in life.

But there is a downside to constantly pushing through and pretending we are coping better than we really are. The people around us often begin to believe that things are not all that bad, or that we are handling everything well. Many times, that is the furthest thing from the truth.

We also learn very quickly that talking too openly about pain, exhaustion, limitations, or fear often makes other people uncomfortable. Sometimes people respond with denial because it is difficult to accept that someone they love is truly struggling. Other times, people quietly pull away because it hurts to realize there is very little they can do to fix it.

One of the hardest parts of living with Psoriatic Arthritis is that many people simply cannot imagine being this sick, being in this much pain, or living with this many limitations for years or even decades. They struggle to understand how we can manage certain things on one day, but during a flare, find those very same tasks nearly impossible the next day.

Because of that, people sometimes assume we are exaggerating, being inconsistent, not trying hard enough, or somehow causing our own problems. Instead of responding with empathy and support, some people become frustrated, angry, dismissive, or even hostile. In some cases, they begin blaming the person with PsA for the illness itself or for the limitations the disease causes.

What many people do not understand is that Psoriatic Disease is unpredictable. Symptoms fluctuate and flares happen. A person may seem relatively functional one day and be almost unable to move the next. That does not mean the illness is not real. It means the disease itself is unpredictable and relentlessly exhausting.

Over time, many of us learn to stay quiet. We learn to smile, to change the subject, and to say, “I’m fine,” even when we are in pain, exhausted beyond words, barely functioning, or desperately wishing someone understood that we are not doing nearly as well as we appear to be.

by Jan Mariet, 5/19/2026


My original article about PsA from 2021 can be found at this link. When Your Loved One Has Psoriatic Arthritis (PsA) – Jan Mariet’s A Day in the Life

Many Wheelchair Users Can Still Stand and Walk

When most people picture a wheelchair user, they imagine someone who cannot walk at all. In reality, that description only fits a small minority of wheelchair users. Many people who use wheelchairs can stand or walk short distances but rely on mobility aids for safety, energy management, or independence. Wheelchair use is not always about the inability to walk. It is often about the cost of walking: physically, energetically, and emotionally.


Why People Use Wheelchairs

A group of friends, including one friend in a wheelchair, chat, laugh, and have a good time.  The caption on the photo says, "Belonging is something we all deserve."

“Why do people use wheelchairs?” It seems like a simple question: “Because they can’t walk.” But that answer leaves out most wheelchair users. Many can take a few steps or stand briefly, yet walking may cause pain, fatigue, dizziness, or imbalance. A wheelchair provides a safer, more sustainable way to move through the day and participate in activities they might otherwise have to skip.

Mobility and stamina can vary greatly from day to day, depending on pain levels, fatigue, or symptom flare-ups. Some people use a wheelchair occasionally, while others rely on one regularly. During busy periods or stressful times, wheelchair use often increases as people try to manage symptoms while still engaging in daily life. Rather than symbolizing limitation, a wheelchair often represents freedom, safety, and inclusion.


How Common Is Ambulatory Wheelchair Use?

There is no official U.S. statistic separating wheelchair users who cannot walk from those who can. However, national surveys show that most wheelchair users report conditions such as arthritis, stroke, multiple sclerosis, or orthopedic disease, conditions that often allow partial mobility. Only a smaller share cite complete paralysis. In short, many wheelchair users are ambulatory, while a minority are completely unable to walk.

Ambulatory wheelchair users are those who can walk or stand to some extent but use a wheelchair to conserve energy, reduce pain, or prevent falls. Many chronic illnesses are unpredictable. Someone might walk into a restaurant one day and need their wheelchair the next.

Outsiders sometimes misinterpret this variability as inconsistency or exaggeration, when it is actually a hallmark of fluctuating conditions such as multiple sclerosis, Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS), or chronic pain disorders.

Conditions that often involve partial mobility include arthritis, lupus, POTS, long COVID, Ehlers-Danlos syndrome, chronic fatigue syndrome, neuropathy, and spinal or joint disorders. Being able to take a few steps does not mean someone can walk safely, consistently, or without pain.


Myths and Misconceptions

Myth: Wheelchairs are only for people who cannot walk.
Fact: Most wheelchair users can walk, just not safely, consistently, or far enough.

Using a wheelchair is not giving up or taking the easy way out. It is choosing safety, independence, and participation over exhaustion, injury, or isolation. Some ambulatory wheelchair users walk indoors but use their wheelchair in airports, shopping centers, or places that require long distances. Others use it during flare-ups, in bad weather, or when fatigue or dizziness increases.

Unfortunately, mobility aids are sometimes viewed as a “last resort,” but early use can prevent overexertion, falls, and long-term damage. Insurance policies and medical gatekeeping often make it difficult for ambulatory users to access appropriate equipment, reinforcing the myth that wheelchairs are only for those who cannot walk.


A Tool of Liberation, Not Limitation

For many people with chronic illness, a wheelchair is not a symbol of paralysis; it is a symbol of freedom. It allows them to attend events, travel safely, and enjoy life without collapsing in pain or exhaustion. Being able to walk a few steps does not mean someone can walk a few blocks, stand in a long line, or navigate uneven ground. The ability to walk does not erase the need for wheels.


Energy Budgeting and Wheelchair Use

Energy budgeting, sometimes called energy management or spoon theory, is one of the least understood aspects of chronic illness. Think of energy as a limited daily allowance, like money in a checking account. Healthy people start the day with a full balance, but people with chronic conditions begin with a smaller and less predictable budget. Every activity, physical, mental, or emotional, withdraws energy: showering, dressing, cooking, walking, holding a conversation, or managing pain. When the account runs dry, symptoms such as fatigue, pain, or dizziness worsen, and recovery can take hours or days. Energy budgeting is the process of spending that limited energy wisely to avoid “crashes” or flare-ups.

A wheelchair plays an essential role in this budgeting process. It is not only about whether someone can walk but about how much energy walking costs and whether it is worth spending that energy. Someone with arthritis may walk across a room but lose the energy needed to cook or socialize later. A person with POTS or Ehlers-Danlos syndrome might stand for a few minutes but faint or dislocate a joint if they push too far. A person with multiple sclerosis might walk short distances but use a wheelchair to prevent fatigue or heat-related symptoms. By using a wheelchair, they conserve energy for the things that bring meaning and joy, not just survival. A wheelchair is, in this sense, a powerful budgeting tool; it allows people to save their energy for what matters most.


Final Thoughts

Wheelchair use is not simply about whether someone can walk. It is about the effort, pain, and risk that walking may cause. For people with chronic illnesses, walking even short distances can deplete the limited energy they need for self-care or participation in daily life. Using a wheelchair helps them prevent fatigue, reduce pain, and live more fully. A wheelchair does not represent loss; it represents access, safety, and choice—the freedom to live life on one’s own terms.


Other articles that might interest you are:

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Disability Benefits Myths & Facts – Jan Mariet’s A Day in the Life