What was the beginning of your rheumatoid arthritis journey like?
2019
When were you diagnosed, and what was your journey to getting a diagnosis like?
2024
What did it feel like to finally have a name for what you had been experiencing?
Daunting, overwhelmed
Do you have any idea what may have contributed to or triggered the onset of your rheumatoid arthritis?
There were hereditary factors but think it was a massive trauma that activated it.
Do you experience rheumatoid arthritis alongside any other health conditions? If so, how do these experiences affect one another?
Yes Osteoarthritis lots of pain and thinning of bones
How does rheumatoid arthritis show up in your body and daily life? What symptoms do you experience?
Flare ups seem to get worse as time goes on . Hands are painful, achy all the time, bone damage lots of breaks. Stiffness every day
How would you describe the pain, stiffness, swelling, or other physical sensations you experience with rheumatoid arthritis?
Very painful and debilitating
How has rheumatoid arthritis affected your mobility or ability to use your hands, joints, or other parts of your body?
Hands are weak and painful, had some finger joint replacements. Legs, knees, shoulder and neck pain. I’m a dog walker by trade find it difficult at times but find exercise helps.
Has rheumatoid arthritis caused any visible changes to your body? If so, what has that been like for you?
Yes medication has affected my body. Thicker tummy and bigger knees
What is fatigue like for you, and how does it affect your daily life?
Fatigue is a massive factor. Constantly tired and brain fog is terrible. Stumble easily, accident prone.
What are your mornings like with rheumatoid arthritis?
Stiff. feeling as though I haven’t had any sleep. Takes time to get going.
How has rheumatoid arthritis affected your sleep and ability to rest?
Always tired, sleep sometimes is hard. I’m exhausted I go to bed and can’t sleep. I do try to have a power nap about 3pm
What is a rheumatoid arthritis flare like for you?
Feel puffy, achy, tired, still and painful
Do you have “good days,” and if so, what do they look like?
Yes I do . Full of energy and stronger
Have you noticed anything that seems to trigger or worsen your symptoms?
Biometrics. Over exercising cold heat
How has rheumatoid arthritis affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
I have to take things slower and give myself breaks. Can’t do simple intricate tasks like tying laces picking things up from the floor and holding things
Has rheumatoid arthritis had an impact on your finances or access to care?
Yes I sometimes have periods of time without being able to work which has a massive financial impact.
What has your experience been like with doctors, rheumatologists, and navigating the healthcare system?
Amazing experience with the hospital, Rheumatoidologists, plastics and bone clinic. Terrible experience with GP
What has your experience been with medications, treatments, physical therapy, lifestyle changes, or other approaches to managing rheumatoid arthritis?
Some of the medication has been a trial and error but quickly picked up and changed. I do persevere with meds as they do take time for the side effects to cool down. I use an infrared heat source and find steam room and saunas help.
What has it been like to live with a condition that others may not fully see or understand?
Hard for people to understand especially my partner. I live with the pain and exhaustion quietly.
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Absolutely yes
How has rheumatoid arthritis affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
Not really . I just muddle through
Has rheumatoid arthritis affected your intimacy or sexual life in any way?
No
What has the emotional or mental side of living with rheumatoid arthritis been like for you?
Have days where I cry and mental fatigue
How has rheumatoid arthritis affected your relationship with your body, identity, or sense of self over time?
Sometimes feel stuck
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Just exercising and music therapy.
Have you connected with other people who have rheumatoid arthritis, either online or in person? What has that experience been like?
No not really
How do you feel rheumatoid arthritis is understood by the medical community, society, and the media? What do you think needs to change?
GPs need to take more time to understand
What would you like more people to understand about rheumatoid arthritis?
Everything
How has your relationship with rheumatoid arthritis changed over time?
Think I have recognised when and what injects flare ups and just except it
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with rheumatoid arthritis?
No
When you think about the future, what fears, concerns, or hopes do you have regarding your rheumatoid arthritis?
Just worried that I might not be able to keep mobile
Is there anything else you’d like to share?
No