Member Spotlight: Miriam
Each month, we invite DBC members with a connection to our theme to share their personal experiences with us. Interested in sharing your story with the DBC community? Email us at firstname.lastname@example.org.
Please introduce yourself to the DBC members.
My name is Miriam. I'm a 30-something, half-Guatemalan living in the Midwest with my husband, and mis hijas (my daughters). I'm an ISFJ, Ravenclaw mind with a Gryffindor heart, and read books like I breathe air. I was born in Chicago, and am the second oldest of five. My family is everything. I have a degree in Human Services, and currently work for a non-profit breastfeeding clinic. I'm preparing to become a Lactation Consultant, and have an interest in maternal mental health. I'm passionate about social justice and diversity.
Why is this month’s topic, chronic illness, near and dear to your heart?
I have two chronic illnesses, hypothyroidism and endometriosis. Both were diagnosed when I was well into adulthood, after the birth of my youngest daughter. I had a miscarriage four months before I became pregnant with her. After she was born, I was depressed, gaining weight without explanation, and EXHAUSTED. I blamed it all on postpartum depression and unresolved depression from my miscarriage, and tried to push through. When she was 9 months old I finally admitted to my husband that I didn't feel normal. After her first birthday, I was diagnosed with hypothyroidism, put on medication, and my depression went away. But something else began bothering me. My periods were incredibly painful. I would need to be in bed with a heating pad, and could hardly sleep due to pelvic pain. I went to the ER due to pain once, and was told "it's just a ruptured cyst". Finally, after a year of unbearable pain, heavy bleeding, bloating, and fatigue that all came around my period and went away in between, my doctor suggested I might have endometriosis. He said I'd need to have surgery to diagnosis it, but made it sound like it really wasn't a huge deal. If they found endometriosis during the diagnostic laparoscopy, they would likely perform an ablation, to destroy any endometrial growth found. A month after surgery, my pain was worse than ever. I was told to wait it out, it should get better. It didn't. So two months later, I had another surgery, this time excision, with the removal of one of my ovaries. My recovery with this surgery was much harder, but I was pain free for about six months.
When pain began coming back, it was gradual at first. Maybe one month, but not the next, and not nearly as severe as before surgery. I was also fighting fatigue, even though my thyroid labs were "normal". It was during this time that I found a support group on Facebook, and learned that endometriosis is one of the least understood diseases. There is no cure, and every woman's symptoms are different. I discovered that excision surgery with an endometriosis specialist is the gold standard, but that those specialists aren't available in every state. I was able to talk to other women like me, and felt validated, even though my returning symptoms were dismissed by my doctor. I found ways to help manage the pain, through yoga, supplements, and diet changes. Trust me, if you are thinking "maybe you should try..." I've already tried it. Most importantly, I knew I wasn't alone. I wasn't crazy, and it wasn't all in my head.
It's been 5 years since my surgeries, and it's time for me to have another. This time, I'm more informed, and have a surgeon chosen, but do not have the money. So we are saving up, and I'm managing my pain as it comes. I know through trial and error what works, and what doesn't. And I've given myself permission to rest on the days I need it. I have an incredibly supportive and brave husband, and daughters who know when I need rest.
Have you read our February selections, Caleb & Kit and Left Neglected? What did you think?
I have not! I'm looking forward to reading both of them along with the rest of the DBC :)
Do you find there is a stigma around chronic illness in our culture? How has this impacted your experience?
Absolutely! Especially when it comes to invisible illness and pain. I don't look sick. My pain isn't constant, but it's frequent enough that is disrupts my life. I have also found that when it's period pain, it's dismissed or equated with normal cramping, PMS symptoms. "just take some ibuprofen before your period, you'll be fine!" or "oh yeah, me too, my cramps are the worst!" It's almost easier to stay silent. It's difficult to talk about my pain, or the bloating and fatigue that accompany it. I have a few people in my life, who I trust, and know that if I talk to them, they will listen and hear me without offering advice. I think that is the one thing a person with chronic illness needs the most. Someone to hear them. Most people try to fix me, tell me to do this, try that, etc. When doctors don't believe you, and friends minimize your pain,or offer misinformed remedies, it's lonely and disheartening. I have done a lot of research, and I have learned from many women with this same illness. I don't need advice, I need a listening, understanding ear (and better access to affordable healthcare, but that's a different soapbox!)
Are there any additional resources (books, articles, podcasts) about chronic illness that you would recommend to our readers?
There is a facebook group that I am a part of, that was a lifesaver. It's full of resources, like a list of endo specialists, info on how to talk to your healthcare providers about endo, etc. There are also two IG pages that are doing so much in spreading awareness about this disease, and are a safe haven for women to talk about their experiences. @endowhat has created a film, and put together kits to teach school nurses how to look for symptoms and screen the movie. Their work is incredible. @theendo.co fights for awareness, education and sorely needed research funding for endometriosis. They post tips for how to manage pain and flares, and are transparent about their own struggles. Finally, @sufferingthesilence is an organization that spreads awareness about chronic illness and fights the stigma associated with invisible illness.
Is there anything else you’d like our members to know?
Pain is not normal. When I first got my period, I had very heavy, irregular cycles with a lot of pain. I was told by my doctor it was normal, I just needed some regulating. So they put me on birth control, which suppressed my symptoms for over a decade. The average time it takes women with endo to be diagnosed from onset of symptoms is 10 years. 10 years, several doctors, and constant dismissal of symptoms. Many doctors are misinformed about the disease and treatment, due to a lack of funding for research. This is despite the fact that 1 in 10 women in the US are struggling with endometriosis. This needs to change. But until it does, you are your own advocate. Get support, inform yourself about the best treatment, and fight like hell, because your pain is not normal. Also, even though this disease is physical, it takes a toll mentally. Don't ignore your mental health, and do what you can to take care of yourself (a message I need reminding of too).