Jamie shares her journey getting her psoriatic arthritis diagnosis when her first child was two years old, and her experiences with pregnancy and postpartum with her second child (4 months old at the time of recording).
In this episode, Cheryl & Jamie discuss:
- Jamie’s challenging diagnosis journey
- The difference between her pre-psoriatic arthritis pregnancy and parenting experience and her experience being pregnant with psoriatic arthritis, including a discussion of medications
- The difficulties of being a young person with rheumatic disease
- The challenges of family planning with rheumatic disease: whether to have another child or not?
- What it’s like to live with anxiety along with rheumatic disease
- Balancing gratitude and grief
- Learning to overcome “mom guilt”
- Our children need us to be present not perfect
Speaker bios:
Jamie lives in Gloucestershire, England, with her husband and their two children; Harper aged 4 and Kit who is almost 5 months. She was diagnosed with psoriatic arthritis in early 2019 and is still in the process of “learning” her condition. She is a freelance writer and self proclaimed coffee addict who is passionate about combining traditional and holistic approaches to find the best combination to manage her chronic illness.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Resources mentioned in the episode:
- American College of Rheumatology clinical guidelines for pregnancy with rheumatic disease
- Mamas Facing Forward – website
- Books for children to learn about parents with a chronic illness
- Social media accounts: Instagram https://www.instagram.com/MamasForward/
- Versus Arthritis website
- Fooled by Randomness book
- Jamie’s Socials
- Instagram @mama.bear.squares
- Cheryl’s Arthritis Life freebies:
- Free Handout: Cheryl’s Master Checklist for Managing RA
- Free Training: Arthritis Life Hack Crash Course
- Cheryl’s Arthritis Life social media pages:
- Cheryl on Instagram
- Cheryl’s website: Arthritis Life
- Cheryl’s Tiktok: @ArthritisLife
- Arthritis Life Facebook Page
- Cheryl’s Twitter: @realcc
- Cheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
Medical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Here’s the show breakdown:
01:00 – Jamie’s introduction and her initial health issues: consistent pain in her fingers, spine, and neck after her first child was around two years old.
05:00 – Jamie struggles to get treated seriously by doctors. She’s diagnosed with psoriatic arthritis after originally her doctors said she was “too young” for it.
5:35 – She and Cheryl discuss their similar diagnosis journeys with medical gaslighting, how both of them had to have their parents advocate for them and spend money on additional doctors before they got their diagnoses.
7:30 – Discussion of anxiety as a result of untreated / undiagnosed chronic illness. Jamie & Cheryl discuss their experiences getting therapy for anxiety and coming to terms with it.
9:45 – Jamie’s first pregnancy without psoriatic arthritis, as compared to her second pregnancy with it. Discussion about medication decisions and how difficult it was to decide whether to have another child or not.
12:08 – What was it like to be pregnant with psoriatic arthritis during COVID19 pandemic (in 2020)? Includes a discussion about the pregnancy-induced remission she experienced.
14:30 Jamie discusses her experiences breastfeeding and difficult postpartum medication decisions. Cheryl and Jamie discuss how complicated medical decisions are in the context of a family system, not just what’s “best” for the baby.
16:30 – Jamie discusses comfortable ways to hold the baby during breastfeeding and the ways in which aspects of the newborn process are easier due to lockdown.
18:00 – Jamie discusses her mixed feelings about using adaptive aids or gadgets in the home, as a young person with arthritis.
20:00 – Balancing gratitude and grief as a mom with a disability.
22:00 – The importance of learning how to adapt continuously, rather than seeing your chronic illness as having an “end point.”
23:15 – How Jamie’s flare up affects her ability to parent her “big kid” (her 4 year old) and her feelings of mom guilt, complicated by the fact that she’s experienced parenting her child prior to her diagnosis.
26:10 – Cheryl and Jamie discuss how difficult it can be to decide whether to have additional children when you have a rheumatic disease, and how to spread out the space between your children.
34:45 – Cheryl parenting mantra: “My son needs me to be present, not perfect.”
36:00 – Learning to enjoy the simple pleasures with your children.
39:00 – How Cheryl & Jamie explain their conditions to their children and how it’s helped their children develop empathy.
42:00 – Coping with feelings of “unfairness” when you get diagnosed with an autoimmune disease when you had previously been healthy and had healthy behaviors.
45:00 – Fears of passing your autoimmune condition on to your children.
47:45 – Mamas Facing Forward – resource for moms and moms to be living with chronic illness. Includes books for children about parents that have disabilities.
50:00 – The importance of having clear expectations to your partner and delegating if possible when raising children.
55:00 – The role social media plays in Jamie & Cheryl’s lives; a blessing and a curse. It can be confusing as the diseases differ drastically between people.
58:00 – What the word “progressive” meant to Jamie when diagnosed and how that has changed over time with the modern treatment options and medication.
1:01:00 – Cheryl’s experience when newly diagnosed, having faith in the medications.1:05:00 – The importance of considering how representative the stories that you’re looking at on social media are. When things are going well, people aren’t on the disease-specific social media groups.
