What was the beginning of your rheumatoid arthritis journey like?
Initially wrist pain, assumed to be carpal tunnel.
When were you diagnosed, and what was your journey to getting a diagnosis like?
Consultant seen for carpal tunnel knew it was RA and referred me to the correct department.
What did it feel like to finally have a name for what you had been experiencing?
It was a relief to know what it was
Do you have any idea what may have contributed to or triggered the onset of your rheumatoid arthritis?
I suspect stress
Do you experience rheumatoid arthritis alongside any other health conditions? If so, how do these experiences affect one another?
Raynaud’s syndrome
How does rheumatoid arthritis show up in your body and daily life? What symptoms do you experience?
Painful, swollen and stiff joints in hands, feet, wrists, knees, shoulders and neck. Stiffness last several hours per day
How would you describe the pain, stiffness, swelling, or other physical sensations you experience with rheumatoid arthritis?
Feels like walking on gravel, hands that don’t grip properly are very frustrating.
How has rheumatoid arthritis affected your mobility or ability to use your hands, joints, or other parts of your body?
Opening things, even dressing can be difficult some days.
Has rheumatoid arthritis caused any visible changes to your body? If so, what has that been like for you?
Permanently swollen joints in hands
What is fatigue like for you, and how does it affect your daily life?
Fatigue is more than just tired, even when you’ve had enough sleep you still feel tired.
What are your mornings like with rheumatoid arthritis?
It can take several hours to be able to move properly
How has rheumatoid arthritis affected your sleep and ability to rest?
I don’t sleep well.
What is a rheumatoid arthritis flare like for you?
Pain, swelling, the overwhelming feeling of tiredness
Do you have “good days,” and if so, what do they look like?
Yes, on good days, i can do anything i want.
Have you noticed anything that seems to trigger or worsen your symptoms?
Stress is definitely a trigger
How has rheumatoid arthritis affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
I no longer work.
Has rheumatoid arthritis had an impact on your finances or access to care?
Not specifically
What has your experience been like with doctors, rheumatologists, and navigating the healthcare system?
Mostly very good, although more recently contacting my local hospital rheumatology has been almost impossible
What has your experience been with medications, treatments, physical therapy, lifestyle changes, or other approaches to managing rheumatoid arthritis?
I was on biologics until they caused sepsis, no recent treatment has been so effective
What has it been like to live with a condition that others may not fully see or understand?
It’s not always easy, people just hear the word arthritis and tell you they have it
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Frequently
How has rheumatoid arthritis affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
My husband does his best and is very supportive even if he doesn’t fully understand RA
What has the emotional or mental side of living with rheumatoid arthritis been like for you?
Mostly I remain positive and live as normal a life as possible
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
No
Have you connected with other people who have rheumatoid arthritis, either online or in person? What has that experience been like?
Not many, I have spoken to a few newly diagnosed RA sufferers through my amazing OT
How do you feel rheumatoid arthritis is understood by the medical community, society, and the media? What do you think needs to change?
Not well
What would you like more people to understand about rheumatoid arthritis?
That it’s an autoimmune disease, that causes fatigue as well as joint pain
How has your relationship with rheumatoid arthritis changed over time?
No, i’ve always been determined not to let it stop me doing anything
When you think about the future, what fears, concerns, or hopes do you have regarding your rheumatoid arthritis?
I try not to dwell on that