From patient to patient: living and dealing with pain stigma
Updated: Sep 8, 2021
Sam Abel, a 21 year old girl from Southern California, is a chronic pain warrior diagnosed with multiple chronic pain illnesses including endometriosis, adenomyosis, and interstitial cystitis. Since her diagnosis, she has taken it upon herself to raise awareness for young people with chronic pain through building a social media presence, where she currently has over 8000 followers on instagram. Fortunately, we had the chance to ask her about her journey with chronic pain so far. Here are the three main topics we will be covering in today’s article:
The challenges she has encountered in her pain journey so far
Her experience with stigma of young people with chronic pain and tips on how she overcame them
Her top picks for pain resources and treatment options
BEING YOUNG WITH PAIN
On a daily basis, Sam suffers from various symptoms including extremely painful and heavy periods, lower back pain that radiates throughout both my legs, chronic pelvic pain/pressure, bloating and digestion issues and so much more! This makes normal, daily activities such as schools, errands and work incredibly difficult to complete. Yet, she is told by many to ‘stop being overdramatic’ and that the pain is ‘all inside her head’, leaving her no choice but to put her head down and push through the pain.
She further talks about how being young and getting any sort of medical help is nearly impossible.
“Most doctors assume teens and young adults are not able to have chronic illness, which is completely outrageous as especially with endo, it can occur at ANY age.”
Having to fight multiple doctors to just get simple tests done or scans was extremely exhausting, and she believes that the gaslighting faced by young people in the medical community is unacceptable and needs to change.
THE GREATEST CHALLENGE
She mentions that the worst aspect of her journey so far was overcoming the feeling of isolation and being misunderstood from the people around her.
One of the worst experiences she faced from stigma was shortly after a surgery, when she was hospitalized for an infection. She recalled hospital staff continuously making disgusting comments about how she was “too young to be here” or that “endo is just a bad period why would u get surgery for it?”.
“I was probably the sickest I have ever been, high fever with tachycardia, only 2 days after almost a 4 hour long surgery, not able to keep anything down and on 3 different antibiotics. Constantly being told my pain wasn’t valid blew my mind, and broke my heart.”
SAM’S TOP TIPS FOR YOUNGER PAIN WARRIORS
Find your people! - Whether that’s family, friends, support groups online, or professional support, it is necessary to have people in your corner. While support is needed, not every person in your life currently is going to give you that, and that’s okay. It is important to put your health first, and people who love and care for you will stick around and be helpful, not hurtful
Be prepared at medical appointments - When advocating for yourself at doctor appointments, be sure to come as prepared as possible. Keep a symptom journal to show, keep all your medical records together in a file for them to look through, write down questions and concerns you have before the appointment to make sure you leave with all the info you were seeking. If doctors refuse to run tests or scans, tell them you would like them to note on their records they refused, and this will likely get them to do it since they would be liable if you ended up having something found by another practitioner.
MOVE ON! - If you doctor doesn’t listen, doesn’t want to help, or gaslights you, MOVE ON! So many of us in the chronic illness community can agree that while going through multiple doctors is frustrating, it is worth it in the end once you find the right fit
Educate yourself and others - Do research!! The more you know, the better you can advocate for yourself. It is also important to spread awareness. Talk about these stigmas to friends and family and share to your socials. The more people are aware, the better off future generations will be. Also, as I mentioned before, do research, don’t be afraid to tell doctors when they are wrong or promote these stigmas. Bring in articles to your appointments, as education is key for stopping the spread of stigmas in general.
Stay connected- Reaching out to friends and family that care for you is so important! If you have the option, I highly recommend a therapist to help sort out any medical trauma or medical anxiety you experience as it has helped me tremendously!!
Other than that, take it easy. It’s okay to say no, it’s okay to rest and take breaks. Listen to your body and go easy on yourself!
HOW SHE MANAGES PAIN
Medication: CBD & TBC products
Supplements: Magnesium and Omega 3 for inflammation
Physical therapy - especially endo pelvic physical therapy for endometriosis patients
Food: Limiting inflammatory foods causing endometriotic flares
Epsom salt baths
Turmeric and curcumin
"Chronic pain is a beast. It is so cruel and never leaves you. You can be okay one day, and unable to get around the next. It’s unpredictable and hard to explain. For those who suffer with chronic pain, it’s so important to keep in mind it is never your fault. I found myself blaming myself for a lot of the things I missed out on, or having certain limitations in my life that came between relationships, school, and work. Go easy on yourself! You are not your chronic pain. You are amazing and strong, and I believe you always!! For those who don’t, you never know what people are going through. We often downplay our pain to accommodate others, so please keep in mind that if we don’t look like we are in pain, we likely still are. If we do look like we are in pain, it’s beyond imaginable pain. " - Sam Abel