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Photo testimonial: Maintain hope despite the side effects of treatments for rheumatoid arthritis

Mar 19, 2019

Photo testimonial: Maintain hope despite the side effects of treatments for rheumatoid arthritis

 

Virginia's testimonial
Maintain hope despite the side effects of treatments for rheumatoid arthritis

 

rheumatoid arthritis

Shortly after the birth of my third child, I started to experience joint pain. I was told that this was normal after childbirth, in addition to having three children to manage, a home and a job. After several discussions with my physician and a battery of tests, the diagnosis came: "mam, you have rheumatoid arthritis".

Finally having the diagnosis

I was happy that I could finally put a name to this invisible disease that is not understood by those around me because the pain is not visible. The treatments followed one after another in attempt to reduce the pain.
One day, my rheumatologist prescribed a so-called biological treatment... what a beautiful word to hide the fact that you are injected every month with a molecule used in oncology. This treatment allows you to move a little more, gain some flexibility, and slow down the progress of this disease.

Side effects of biological treatment

But no one warns you of the side effects: hair loss, nausea... Cortisone reduces inflammation and makes pain bearable but it gives you something extra: hello weight gain. It's hard to see your image change, to admit that physically, I'm diminished. It's hard in the morning when your brain says "let's get up" and your body says "uh... no".
I sometimes feel humiliated and so misunderstood by those around me who do not know the pain I am in, which is very much with me day and night.

Maintaining hope despite rheumatoid arthritis

I try to find positives: a day with bearable pain is a day saved. I try not to get discouraged and keep hope that there are better days.

And during those better days, I try to be a normal mother, a mother who is not in pain and who can do activities with her children even though I know that the next day I will be in, and a, real pain.

I enjoy every positive moment and I say to myself every day "Carpe Diem(which tends to mean "seize the day").

This testimonial is part of the graduation project of Gaëlle Regnier, a student in photography at the Agnès Varda School of Photography and Visual Techniques in Brussels. She chose chronic pain as the theme of this photo report to highlight the patients and their struggle.

 

Other testimonials
Claire: "Continuing to work with rheumatoid arthritis"

Alain: "The labor market excludes the chronically ill"

Delphine: "Years of diagnostic uncertainty facing Ehlers-Danlos Syndrome"

Marie: "Irritable bowel syndrome prevents people from living"

Onrella: "KISS syndrome - from Mother to Son"

Quentin: "Ulcerative colitis won't stop me from travelling"

 

 

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments

on 3/20/19

Hello members, 

Here is a new short testimonial of a member's journey with RA, the treatments and side effects, and advice.

Do you share anything in common with Virginia? Share and comment below.

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on 3/20/19

I ‘m not sure who Virginia is 😳

on 3/20/19

@Hidden username Virginia is the member who shared her story.

I share similar side-effects with you, Virginia. I suffer from nausea and also the medicine seems to completely knock me out... if I do not need to get up to go to work or anything, I honestly could sleep from 10 pm to 5 pm.

Does anyone else use Enbrel and suffer from the inability to wake and get up? I literally can sleep through an earthquake... I actually just overslept the other day from work.

I also like Virginia try to make the most of the days where I have less pain than usual and can enjoy my day and time with family and friends.

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