Beyond Psoriasis - Real Life with PsA

Beyond Psoriasis - Real Life with PsA Psoriasis since winter 1996. Psoriatic Arthritis since summer 2019.

Sharing clear experience-based awareness about psoriasis, psoriatic arthritis (PsA), and their physical and psychological impact over time.

DON’T FEEL SORRY FOR ME. UNDERSTAND ME.This may be the most important post in this series.Most people living with chron...
18/08/2026

DON’T FEEL SORRY FOR ME. UNDERSTAND ME.

This may be the most important post in this series.

Most people living with chronic illness don't want every conversation to become about illness.

We don't necessarily want pity. We don't want everyone walking on eggshells. We don't want every bad mood blamed on our condition. And we definitely don't want our entire identity replaced by a diagnosis.

We are still ourselves. We laugh, work, love, get angry, make mistakes, we dream.

We can be difficult sometimes, completely independently of any medical condition :)

What chronic illness changes is not our humanity. It changes some of the conditions under which we live it.

So don't expect nothing from us. Expect plenty.
Expect friendship, Love, Effort, Ideas, Contribution, Responsibility, Humour, Ambition.

Just leave a little room for the reality that some days our bodies won't cooperate with our intentions.

Don't reduce us to what we cannot do.

Don't pretend our limitations don't exist either.

Meet us somewhere in the middle.

Not with pity. With understanding.

Because sometimes the greatest support you can give someone with a chronic illness isn't fixing anything.

It's knowing the difference between the Person and the condition they're carrying. 💙

Understanding changes relationships. Awareness changes lives.

PLEASE DON’T LET CHRONIC ILLNESS BECOME LONELINESS.There is a social side of chronic illness that doesn't appear on bloo...
18/08/2026

PLEASE DON’T LET CHRONIC ILLNESS BECOME LONELINESS.

There is a social side of chronic illness that doesn't appear on blood tests.

People slowly disappear. Not necessarily because anybody did anything wrong.

You cancel three dinners. Decline two trips. Leave another gathering early.

Eventually people think: “He probably doesn't want to come.”. So they stop asking.

And sometimes the person who couldn't attend suddenly realizes something painful: Nobody asks anymore.

Please keep inviting us. Let us decide. Sometimes we'll say no. Sometimes we'll say maybe. Sometimes we'll turn up for an hour and disappear in thin air :))

And sometimes we'll surprise everybody, including ourselves and stay until the end.

An invitation isn't just an invitation. Sometimes it quietly says: “You're still part of us.”

And that can mean more than you realise. 💙

Understanding changes relationships. Awareness changes lives.

CHRONIC ILLNESS DOESN’T CANCEL AMBITION.A person can be exhausted and ambitious. In pain and intelligent. Chronically ...
16/08/2026

CHRONIC ILLNESS DOESN’T CANCEL AMBITION.

A person can be exhausted and ambitious. In pain and intelligent. Chronically ill and highly capable.

These things can exist at the same time.

At work, people sometimes confuse physical limitations with professional limitations.

They are not necessarily the same. Someone may need, A short break, A more flexible schedule, Occasional remote work, Time for medical appointments, A different chair or workspace, A little understanding during a flare,...

None of those automatically means lower standards or lower performance.

Sometimes a small amount of flexibility allows someone to contribute enormously.

Judge people by their results, judgement, integrity and contribution, not by whether their body operates exactly like everybody else's.

The objective shouldn't be: “How do we make this person work like everyone else ?”

Sometimes the better question is:

“What environment allows this person to perform at their best ?” 💙

Understanding changes relationships. Awareness changes lives.

SOME DAYS I NEED HELP. SOME DAYS I NEED INDEPENDENCE.Yes, this can be confusing. 😄One day: “Can you please help me with...
16/08/2026

SOME DAYS I NEED HELP. SOME DAYS I NEED INDEPENDENCE.

Yes, this can be confusing. 😄

One day: “Can you please help me with this?”

Another day: “I CAN DO IT MYSELF! STOP TREATING ME LIKE A HANDICAP"

Welcome to chronic illness. There is a reason.

Losing physical capacity, even temporarily, can make independence incredibly valuable.

Sometimes accepting help feels wonderful. Sometimes doing something ourselves, even slowly and painfully, reminds us that we're still capable.

So what's the solution?
Ask. “Do you want some help?”
Possibly the most useful five words you can say.

Don't automatically assume we're incapable. And don't automatically assume we're fine.

Give us the dignity of choosing.

Help should make someone feel supported, not helpless. 💙

Understanding changes relationships. Awareness changes lives.

15/08/2026

💙 SUPPORT ME. DON’T MANAGE ME.

People living with chronic illness receive a remarkable amount of free medical advices.

“You should stop eating that.”
“You need to exercise more"
"My friend's cousin tried this supplement…”
“Have you tried turmeric ?”
“You just need to lose weight”
“You take too many medicines.”

Usually, it comes from love and care. Or at least I hope so :)

But living with chronic disease already means doctors, tests, medication, appointments, symptoms and decisions.

Sometimes we don't need another consultant at the dinner table.

Try replacing: “You should…” with “Would anything help ?”. Oww that would be nice for a change.

That tiny change matters. Support respects autonomy. Control removes it. Encourage healthier choices. Offer to walk together. Help when help is needed. Listen when someone needs to talk.

But remember, we are still adults living our own lives, not diseases requiring full-time supervision.

Sometimes the most supportive thing you can do is simply walk beside us, a hug, or simply couple of taps on the shoulder from time to time 💙

Understanding changes relationships. Awareness changes lives.

14/08/2026

Beautiful day to you all Beautiful humans,

Would you please help me out here. I'm trying to confirm a pattern/ theory.

Those with Ps or PsA, could you tell me your blood type and whether one of your parents or first degree relatives has or had an autoimmune disorder and if yes, what blood type they have ?

I'm A+ and had a first degree relative (not my parents) with autoimmune disorder, he was A+ as well. I'm also aware of couple of more similar cases like me (same blood type A+ as the parent with disorders)

💙 LIVING WITH USWHAT CAN YOU EXPECT FROM ME?Chronic illness requires understanding. But understanding doesn't mean remo...
13/08/2026

💙 LIVING WITH US

WHAT CAN YOU EXPECT FROM ME?

Chronic illness requires understanding. But understanding doesn't mean removing every expectation.

You can still expect Honesty, Respect, Effort, Communication, Responsibility, Love. Participation whenever realistically possible.

And yes, you can sometimes tell us when we're being unreasonable :)

But there are things you may need to stop expecting to be completely consistent;

Energy, Physical endurance, Pain levels, Sleep quality, Concentration, Social availability, Recovery time.

The difficult part is that these things can change from one day to another.

Understanding chronic illness isn't lowering standards for someone's character.

It's adjusting expectations around circumstances they don't completely control.

Expect the person to keep trying.

Just understand that “trying” won't look identical every day. 💙

Understanding changes relationships. Awareness changes lives.

💙 LIVING WITH USPLANS MAY CHANGE. PLEASE DON’T TAKE IT PERSONALLY.One frustrating thing about chronic illness?You can ma...
11/08/2026

💙 LIVING WITH US

PLANS MAY CHANGE. PLEASE DON’T TAKE IT PERSONALLY.

One frustrating thing about chronic illness?

You can make plans on Tuesday for Saturday and Saturday's body was apparently not consulted. 😄

Pain changes, fatigue changes, inflammation changes, sleep changes, energy changes.

Some days are surprisingly good. Others arrive without explanation.

So yes, sometimes we cancel. Sometimes we arrive late. Sometimes we leave early. Sometimes we say “I'll see how I feel tomorrow".

That can be frustrating for friends and family and it's okay to admit that.

But please don't automatically interpret unpredictability as lack of interest.

We may genuinely have been looking forward to seeing you.

And here's something important, Please keep inviting us :))

After enough cancellations, people sometimes stop asking.

That's understandable. But eventually chronic illness can quietly become social isolation.

Give us permission to say no without making the next invitation disappear. 💙

Understanding changes relationships. Awareness changes lives.

💙 LIVING WITH USMY ENERGY HAS A BUDGET.Imagine waking up every morning with money in your account, except you don't know...
10/08/2026

💙 LIVING WITH US

MY ENERGY HAS A BUDGET.

Imagine waking up every morning with money in your account, except you don't know how much.

Some mornings you have $100. Others $50. And some really special mornings you check the balance and apparently somebody went shopping while you were asleep. 😂

That's chronic illness energy. Showering costs something. Driving costs something. Concentrating costs something. Working costs something. Socialising costs something. Pain itself costs something.

And once today's account is empty, borrowing from tomorrow often comes with interest.

This is why someone might manage an important meeting but decline dinner afterwards.

It isn't necessarily because dinner matters less. They may have spent today's entire budget getting through the meeting.

So when someone says: “I don't have the energy today.”

Try not to hear: “I don't want to.”

Those are very different sentences. 💙

Understanding changes relationships. Awareness changes lives.

PLEASE DON’T MEASURE ME AGAINST THE OLD ME.“He used to have so much energy.”“She used to go out all the time.”“You could...
10/08/2026

PLEASE DON’T MEASURE ME AGAINST THE OLD ME.

“He used to have so much energy.”

“She used to go out all the time.”

“You could work 12 hours before.”

“You weren't like this a few years ago.”

Don't you think we know that ! We remember that person too.

Chronic illness can change your physical capacity without changing your personality, intelligence, ambition or desire to live.

That's one of the hardest things for other people to understand.

People living with PsA, metabolic disorders and other chronic inflammatory conditions often have to constantly renegotiate what their bodies can realistically do.

That doesn't necessarily mean giving up. It means adapting.

Please encourage us to keep moving forward.

Challenge us when we genuinely need challenging.

But don't make yesterday's body the standard by which you judge today's person.

The goal isn't to become who we were before illness. It is to build the best possible life with the body we have today. 💙

Understanding changes relationships. Awareness changes lives.

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