What was the beginning of your rheumatoid arthritis journey like?
It was pretty calm, I was totally unaware of RA at the time of blood test, I honestly thought the pain was to do with menopause
When were you diagnosed, and what was your journey to getting a diagnosis like?
It was quick, dX by GP, who then referred to Rheumatologist … the wait time was 1 year plus… we need to fix that,
I did a phone around and was triaged quickly, but I since know this is not always the case, how it is said early intervention, but no ability to consult with dr
What did it feel like to finally have a name for what you had been experiencing?
It was good, in that I could seek knowledge, in preparation for first appt
Do you have any idea what may have contributed to or triggered the onset of your rheumatoid arthritis?
My thoughts… Covid vaccination, and I had a lot of horrid life stuff, stress
Do you experience rheumatoid arthritis alongside any other health conditions? If so, how do these experiences affect one another?
No
How does rheumatoid arthritis show up in your body and daily life? What symptoms do you experience?
Pain, inability to do life, work, family commitments
How would you describe the pain, stiffness, swelling, or other physical sensations you experience with rheumatoid arthritis?
The worst pain I have experienced
How has rheumatoid arthritis affected your mobility or ability to use your hands, joints, or other parts of your body?
Struggled to do my job, office work, I am 3 years in with no improvement dispite medication
Has rheumatoid arthritis caused any visible changes to your body? If so, what has that been like for you?
Hands, walking, strength
What is fatigue like for you, and how does it affect your daily life?
Wow, this is the worst, I would have never believed the fatigue if not experienced first hand
What are your mornings like with rheumatoid arthritis?
Slow
How has rheumatoid arthritis affected your sleep and ability to rest?
I rest, but sleep has been affected in a major way, lucky enough I have family support to rest and sleep when I can, family life has adjusted to “my needs”
What is a rheumatoid arthritis flare like for you?
Painful, debilitating and mentally tough, originally bounced back quick, but it’s harder now to bounce back
Do you have “good days,” and if so, what do they look like?
Some days are better, wouldn’t say good, but mentally your waiting for the next flare etc
Have you noticed anything that seems to trigger or worsen your symptoms?
Stress, being busy, shopping, housework, events
How has rheumatoid arthritis affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
This week I have handed in my notice, to a job that I loved, I am terribly sad
Has rheumatoid arthritis had an impact on your finances or access to care?
It’s not cheap
What has your experience been like with doctors, rheumatologists, and navigating the healthcare system?
Supportive, but only can do so much, not fixing me, as such
What has your experience been with medications, treatments, physical therapy, lifestyle changes, or other approaches to managing rheumatoid arthritis?
Not noticed any improvements, always researching, not found the “magic” fix as yet
What has it been like to live with a condition that others may not fully see or understand?
Very f’n hard
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Absolutely
How has rheumatoid arthritis affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
I am lucky, but still can be a challenge
Has rheumatoid arthritis affected your intimacy or sexual life in any way?
YES
What has the emotional or mental side of living with rheumatoid arthritis been like for you?
Depressing, taking an anti depressant now
How has rheumatoid arthritis affected your relationship with your body, identity, or sense of self over time?
Yes
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
No, it’s a day to day surprise, I try to keep hope
Have you connected with other people who have rheumatoid arthritis, either online or in person? What has that experience been like?
FB pages, it can be a source of information and support, but can also bring you down
How do you feel rheumatoid arthritis is understood by the medical community, society, and the media? What do you think needs to change?
Awareness, we shouldn’t have to wait for medical, and let’s look at the cost, it’s not just financial
What would you like more people to understand about rheumatoid arthritis?
What it actually is, I had no idea
How has your relationship with rheumatoid arthritis changed over time?
I started with such positivity and hope, it’s fading
3 years and no improvement is hard
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with rheumatoid arthritis?
Become less involved in many things
When you think about the future, what fears, concerns, or hopes do you have regarding your rheumatoid arthritis?
Quality of life concerns