(Content Warning: Medical abuse)
Dear intersex person trying to survive,
Growing up intersex – which is a reality for 0.5% – 1.7% of the population – is full of wonderful things! This can include getting lied to about your diagnosis, feeling different than everyone around you, and sometimes undergoing non-consensual “normalizing” surgeries!
What’s more, we often gain an expensive life-long dependency on the medical industrial complex because we’ve underwent unnecessary and non-consensual medical procedures that come with lifelong consequences (/sarcasm).
I was declared female at birth (DFAB) and doctors discovered early on that I had an intersex variation known as Partial Androgen Insensitivity Syndrome (PAIS). This meant that my sex chromosomes were 46 XY, I had two testes instead of ovaries, and my body was partially intolerant to “male” hormones.
Doctors intervened and tried to jam my non-binary body – which contained a mixture XY chromosomes, internal testes, labia, a clitoris, and a shallow blind ending vagina – back into the binary.
Surgeons lied to my parents and told them I would develop cancer if they weren’t allowed to remove my internal testes. After that procedure, they also removed my “enlarged” clitoris, and gave me a vaginoplasty when I was 11, so I could have normal sex with my future husband.
Combined, these interventions left me sad, angry, and confused. I found myself dependent on this country’s broken health care system in ways that were unsafe and financially devastating.
One glaring example of how intersex kids without adequate resources are continually made vulnerable, and then preyed upon by that same broken system, involves my prior search for an intersex knowledgeable endocrinologist.
When I turned 18, my Children’s hospital swiftly barred me from receiving services any longer. On the hunt for a new doctor, I encountered one who ended up taking advantage of my situation.
This doctor told me he needed to perform a pelvic exam before he could prescribe me the hormones I needed for my general well being and bone health.
He closed the door and put on a latex glove before inserting a finger inside of me to carry out his “pelvic exam.”
I clenched the crispy paper covering the exam table and cried as he performed the exam. Afterwards, he gave me some free samples of a testosterone gel, no prescription, and sent me on my way.
I later discovered that what he did was not only unnecessary, but possibly illegal.
After we turn 18, many intersex kids find themselves lost in the medical industrial complex. Sometimes, like in the example I just shared, we can continue to get hurt further by the system.
Unfortunately, I can’t go back and undo what the medical industrial complex did to me, but I can tell you part of my story and share the strategies I’ve found for wellness and healing.
I’m thirty years old now, and have about 10 years of experience under my belt of trying to navigate what often amounts to an expensive, and often triggering, world of medical care in this country.
The following is a list of free and/or affordable tips on making the process a little bit easier for you!
1. Getting Your Medical Records
Before you do anything on this list, try to get your hands on your medical records. You have two options, and neither are guaranteed – but it’s worth trying.
The first option is free, and involves making an appointment with a new doctor who you trust. Afterwards, contact your past doctor’s office and request they transfer all of your past medical records to your new physician.
Once your new doctor’s office receives a copy, request they make another copy for you to have.
Before reading your records, make sure you have reached out to someone you trust – like a therapist or a friend – and come up with a plan. You don’t want to be caught off guard while reading your records with no one to turn to.
There’s a catch with this free method. Since your medical provider will know what you’re up to, they’ll have an opportunity to modify your records.
For instance, if something in the records implicates them in something they’d rather you didn’t have knowledge about, that record could mysteriously vanish.
Alternatively (and this is sadly common), they may just end up telling you that the records are irretrievable. Many intersex people I know could not retrieve their records because they were mysteriously destroyed in a fire.
The second option costs money, but is generally the safer method for ensuring you receive all of your records.
To do this, contact the medical record division of your past hospital, and request that they personally make a copy of your medical records for you.
When I did this, the office charged a certain amount per photocopied page and the total came out to roughly $50. Coughing up $50 for what I believe to be my property was not only expensive, but also felt like a slap in the face.
Though, as far as I know, my medical providers were not alerted and I own a complete set of my medical records.
While some of the things I read in my records were stomach turning, the knowledge contained in them about my body – and what they did to it – has been critical for me.
2. Paying for That Doctor’s Appointment I Just Told You to Make
While our country still doesn’t fully recognize healthcare as a human right, we do have more options than ever before thanks to Obamacare.
Each state’s free Obamacare option, aka Medicaid, has different eligibility requirements depending on age, pregnancy status and income.
When I was choosing a Medicaid option, I made sure to choose a provider that covered my hormone prescription (Covaryx) because it’s the most necessary, and expensive, of my current prescriptions.
You can find out what medications are covered by browsing each provider’s formulary. Other things you might want to consider are the therapy and psychiatry stipulations, how much co-pays cost for doctor visits and prescriptions, and whether your current physician accepts that specific form of Medicaid.
To get this process started, regardless of whether your state has accepted or rejected Medicaid expansion, log on to healthcare.gov and make an account to check out your available options.
If you’re eligible for Medicaid, the website will let you know and you will receive a determination letter detailing your next steps.
Getting on Medicaid is wonderful because it will mean that you can most likely get your medications and doctors visits (sometimes even vision and dental) for free!
If you end up not eligible for Medicaid, and unable to get insurance from your employer, you can still use the same website to apply for what’s hopefully affordable coverage.
Pro tip: Start this process as soon as possible. It took me close to three months to get covered by Medicaid after I left my job last year.
3. Getting Set Up with a Primary Care Physician
After you get insured, make an appointment with an LGBTQIA+ friendly physician. A good place to start looking for one is by asking your friends on social media, or googling LGBTQ health centers in your neck of the woods.
If you don’t have access to an LGBTQIA+ friendly doctor, try and get a referral to any doctor from a friend or family member who you trust.
As a last resort, you can contact your insurance provider and search for a physician that’s nearby.
Pro tip: You can search the physician’s name on Google and look to see if they have any reviews. Yelp and Zocdoc can be helpful websites to search for reviews. Note, the majority of doctors on those sites usually don’t take Medicaid.
Or you can use RAD Remedy, which is like a queer Yelp for medical providers, to find a doctor that is sensitive to queer and intersex folks’ needs.
4. Getting Your Hormones
Once you’ve got your medical insurance and have found a doctor, you’ll want to make an appointment with them to discuss your hormone needs. There are over 20+ intersex variations, and each variation requires different care and medications.
This is where that insurance coverage comes in handy. Hormones, both estrogen and testosterone, come in many variations. You can try patches, pills, gels, creams, and injections, just to name a few.
Taking my hormones in pill form is what I’ve found works best for me, but you should figure out what works best for you.
As I mentioned earlier, Covaryx is the name of the medication I currently take, and it’s a small pill that contains 2.5 mg of estrogen and 1.5 mg of testosterone in each tablet.
Another option, especially if you have hella money or great insurance, is to get a specially formulated hormone supplement tailored for your body chemistry by a compound pharmacy.
5. What About Those Supplements Tho?
Many intersex people need calcium and magnesium supplements. These supplements help ensure that our bones stay nice and strong, since one of the leading causes of osteoporosis is a lack of hormones.
My Medicaid insurance provider covers free calcium and magnesium supplements.
You can check if yours does too by calling the number on your insurance card and asking.
If the answer is yes, then you just have to get your primary care physician to write you a prescription and pick them up afterwards at your pharmacy.
Pro tip: Pharmacies like Walgreens allow you to log in online and set up free mail delivery of your prescriptions. No more waiting in all those lines! Don’t have a Walgreens or CVS nearby? That’s okay, call your insurance up and ask them if they have a mail pharmacy service that you can use.
6. Speaking of Osteoporosis – Get a Bone Scan
If you do have an intersex variation that makes you susceptible to bone density complications, ask your primary care provider to write you a referral for a bone density scan.
Afterwards, consult with your doctor and figure out if you need to increase or decrease the amount of calcium and magnesium supplements and hormones that you’re taking.
7. Healing the Mind, Body, and Soul
This last set of tips are some of the most important.
As an intersex person, you’ve most likely experienced some form of trauma in your life. Many of us have gone through having part of our bodies taken away, being lied to about our bodies, and other traumatic experiences.
As such, it’s important that we have access to affordable healing options.
One method that’s been invaluable for me is free and sliding scale therapy.
You can also use the RAD Remedy website to find an LGBTQIA+ friendly therapist that’s recommended and reviewed by other queer and intersex people!
When you call a therapist to schedule an appointment, make sure to ask if they take your insurance. If they don’t, ask if they have a sliding-scale option.
If you took only one tip from this whole list, I hope it’s this one. Therapy can be so helpful for folks like us who’ve experienced trauma.
Yet, therapy isn’t always accessible or the best way to heal for everyone.
With that said, you can also use the RAD Remedy site to look up alternative healers who specialize in bodywork such as acupuncture, reiki, massage, etc.
Many people literally store trauma in the fibers of their muscles and fascia.
Some people find relief in the form of massage therapies such as cranial-sacral, rolfing and other techniques focused on releasing trauma and whole body alignment. Many intersex people I know swear by these techniques.
Unfortunately, it’s a lot harder to find free and low cost bodywork practitioners.
If you’re on a budget, ask if any of your friends are massage therapy or acupuncture students looking to fulfill their hour requirements — on you!
You can also look for healing spaces that offer sliding scale options. If you’re in Chicago, check out the amazing Chicago Women’s Health Center (they are very trans and intersex friendly!).
Another form of free therapy I take advantage of, especially when I don’t feel like leaving my house, is online yoga! Last winter, I found this Youtube channel and have found it to be really integral for mental, physical, and emotional well being.
White girl yoga not your thing? I know. Sadly, it’s hard to find other options on Youtube. But thankfully, there are projects like Black Girl in Om, which “creates space for women of color to breathe easy.”
If yoga is not your thing, be sure to check out recorded affirmations like this one on youtube. Try listening to affirmations every night before bed. I noticed negative thought patterns change almost instantly!
Or, you can also just find nice relaxing music with soothing visuals (yes, that’s a unicorn) and lay on your floor while trying to meditate.
Just lay there, hopefully in a dim room, and close your eyes (if that feels okay), and try to focus on taking long slow breaths.
Don’t forget that when all else fails, there’s always crying. Everyone usually feels better after a good cry. Pro tip: Try crying and then eating a delicious donut afterwards – it’s magical.
This list of tips focused on our wellbeing and healing is by no means exhaustive.
Remember that the only person we can control is ourselves. Life is short and we owe it to ourselves to live the best possible life with as much joy as possible!
While this is usually easier said than done, I hope this list can help kickstart you in the right direction.
I’m dying to know what your tips are. Please leave them in the comments! Happy healing <3
Pidgeon Pagonis a Contributing Writer for Everyday Feminism. They are an intersex activist based in Chicago, working to help create a world in which every intersex baby that’s born has the right to bodily autonomy.