Special Guest: Rachel Macdonald - Supposed to Suffer
Summary: On The Tragedy Academy; this week, we welcome Rachel McDonald to discuss her experience living with Endometriosis, a rarely diagnosed disorder targeting only women. Rachel walks us through her painstaking journey of getting diagnosed, the battle to get a prescription, and the hurdles she had to jump through to get a Hysterectomy.
🏃♀️ Getting through everyday life
🤛 Battle to get a prescription
😰 Fear of missing out
👩❤️💋👨 Sex life having Endometriosis
🥺 Early Hysterectomy
[00:01:27 ] Rachel gives a brief synopsis of Endometriosis and its effects. She notes that essentially, Endometriosis is uterine tissue that grows in the wrong place and can cause severe pain, much like cramping but 10x worse. Rachel expresses her frustration with the medical staff, both male and female, who would not take her pain seriously. There only was one medicine in the market that the FDA did not even fully approve.
[00:05:27 ] Rachel walks us through everyday life as an adolescent. She recalls experiencing embarrassment because the pain would make her feel irritable and make it difficult to control her emotions. Rachel felt misunderstood and overwhelmed with fear at the thought of experiencing severe pain every month for the next 50 years.
[00:13:35 ] Rachel walks us through the uphill journey to get her Endometriosis prescription. She notes that she underwent a solo clinical trial since it was still considered an experimental drug. Since the FDA did not approve it, her insurance did not want to cover it. After six months of giving her severe side effects like chest pains, mood swings, and intense depressive symptoms, she had to see a psychiatrist.
[00:18:12 ] Rachel recounts having a fear of missing out but also having the feeling of loneliness. She describes how tiresome it is having to re-explain her condition to everyone and the balance she had to keep between sounding “bitchy” and expressing how she feels. Rachel notes that you can only be diagnosed through surgery and feels fortunate enough to have parents that have good insurance and can afford the medical expenses.
[00:24:54 ] Rachel’s sex life while having Endometriosis was almost nonexistent. She thought the pain was normal for the longest time, and everyone else was playing it up more than it should be. As an engaged woman, Rachel has feelings of guilt for not wanting to participate in sex. Still, she describes being lucky enough to have a fully understated partner who does not pressure her to do something she does not want to do. Nonetheless, the feelings of guilt are still there.
[00:33:44 ] Rachel confesses wishing she had gone to therapy a lot earlier and pleaded with people to do the same. She recalls feeling disillusioned and giving up on herself to the point positive activity she did in her life was solely done for the benefit of others.
[00:37:20 ] Seeing relationships in popular media affected what Rachel considered a healthy relationship. She felt terrible for not giving her fiancée sex, which made him feel bad, and it was a never-ending cycle. Eventually, Rachel learned that every relationship is different, and a healthy relationship exists by its unique perimeters.
[00:41:31 ] Rachel shares having to make the tough decision of getting an early Hysterectomy. It was tough for two reasons: First, being faced with the reality of never having children. The second was the constant judgment and deprecating reactions she would get from healthcare professionals. She notes that her decision was not made lightly. She met with insurance roadblocks, who would not cover the surgery because of her age and scheduling due to the pandemic, and because it was considered elective surgery.
[00:55:14 ] Rachel shares the premise of her and her fiancé’s podcast, The Never-Ending Sleepover. She describes it as lighthearted and fun, with exciting stories of their childhood and conversations of new things they have learned.
Connect with Rachel:
Instagram | @racheljmacdonald
Tiktok | @racheljmacdonald