For World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to! All stories will remain visible on this page of the blog.

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My life with lupus – living to the fullest – “Don’t stop me now” by Claudine from Belgium

‘What did you do last night?’ I asked myself when my alarm clock went off in the morning.  And to clarify, I had done nothing special during that night.

But like every morning I wake up with the headache, the flu-like feeling and the rigidity of my body. The usual stuff, like I always tell my husband when he asks me how I am. But this time it felt as if I had run a marathon. I hadn’t J.

I knew this was coming.  My wolf had warned me with his subtle signals.

‘You’re going too far, you are ignoring me too much’. He admonishes me with his finger in the air. And I know, I realize it. But it remains so attractive to be able to keep up with everyone. Without being stopped, without being slowed down.

After a few minutes I pull myself out of bed. Everything goes very slow. I find it difficult to think, to move and to breathe. ‘I’ll have to be patient with myself today’, I mumble quietly.

In the distance I hear the voice of my son Lenny.  And at the end of the staircase, he is waiting for me with his arms wide open.  I feel so blessed. His big hug creates the first miracle today.

At our breakfast table I close my eyes while I enjoy the scent of my coffee. Hmmm…this is another blissful moment.  And a big smile appears on my face. Because my sandwiches with sprinkles that I’m making will taste so good with my coffee.

My mobile beeps and in a blink of an eye my face brightens up. It is a text message from my daughter Lisa. She is on a school trip this week.  Her message makes me laugh. I miss her terribly! I can’t wait to see her again and to take her in my arms.

In the background I hear the song “Don’t stop me now by Queen, with the ever-inspiring Freddie Mercury. It is still one of my favourite bands.

I turn up the volume of the radio because it’s a great song, it’s exciting and it makes me incredibly happy! Really, you can’t stand still on that song, can you?

And the small dance movements that I’m making, also help the stiffness in my body.

I sing along with the song:

“Don’t stop me now…”

“I’m having such a good time, good time…”

‘Uh, good time? ‘ I think to myself. No, not really no.

However I’m singing all the air out of my lungs.

Absurd, isn’t it?

You know, in my mind I’m not sick, on the contrary. In my mind I’m unstoppable.

I read once in a newspaper: “Look more into your talents and less to your limitations.” That’s wisely said. Often we are too much focused on the things that we can’t do. And it inhibits us.  Because, it is mostly our thinking that limits us.

Although my lupus is still quite active, I feel this fire inside me that can’t be diminished. So I had to find something that I could do with my talents and within my limits. Something that made me feel useful again. Something that I could do at my own pace.

A couple of years ago I started writing about my invisible illness and I share it in my blog It creates more awareness and more understanding about living with arthritis, living with lupus. And the most beautiful thing about sharing these little parts of me is that I’m also helping and supporting other patients.  And this still gives me a lot of warmth in my heart.IMG_0025_2

And that feeling, helping others with my experience as a patient gave me the impulse to do more.  So now I have become a patient-partner in research and a patient representative. I’m so happy that I can contribute and speak up for those who are temporarily unable to.  I can hardly describe in words the powerful energy when we are working together in a patient panel or at a convention. Putting our hands, our thoughts and our energy together.  United we are changing the world into a better place for patients with arthritis. It gives me so much mental energy and friendship in return.

There was a time when I used to postpone the things I wanted to do.

Because of my illness…But now I just do them! So I’m learning to play the piano and I love it. It stimulates my brain again.  And recently I’m into yoga. It helps me to regain strength. And during the drama classes I’m learning to express myself again.

And all this makes me feel so alive again.

You know, I am aware of my sick body, I am aware of my ‘limitations’.

Every morning I get up with my wolf fur. And every day I scan my limits.

What I can do and what not. What will work today and what will not.

It is what it is…

But besides being ill and having daily pain, I experience also very beautiful, intense moments of happiness.  Even if they are only fractions, a few hours, it doesn’t matter.  I’m especially grateful that I’m experiencing them.

My focus is on the things I can do, not on what I can’t.

And even though my wolf often tackles me in all my enthusiasm…

Even if I tread my path with much trial and error.

It will certainly not stop me to follow my heart and to do the things I’m passionate about. It will certainly not stop me to be intensely happy too.

Don’t stop me now…

You are right Freddie.

Show must go on!

That’s the spirit ;-).

Claudine Goyens is a member of CIB LIGAUnknown



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7 days ago

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.

What is the question you should have asked and you didn't?

What is the question you think physicians should answer without being asked?

#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
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Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus. 

What is the question you should have asked and you didnt?

What is the question you think physicians should answer without being asked?
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.

Comment on Facebook

Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament

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Medication side effects short and long twem

1 week ago

More good news for the #lupus commnunity!!

Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.
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1 week ago

Date is set! And #Lupus100 is fast approaching.
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