In My Words: My experience with self-diagnosing after having cancer
The first time I went to an OB/GYN, she referred me to a psychiatrist.
Yes, you read that correctly.
When I was 17 and a senior in high school, I found out I had Stage 2 Papillary Thyroid Cancer. About 13 tumors were removed from my lymph nodes and I had a total thyroidectomy. Beyond that, I’ve always just had health issues, chronic and not. Scoliosis, OCD, anorexia, chronic BV, endometriosis, strep, pneumonia, burst eardrum...
As a result of all of those things — and from being used to hearing my worst case scenario from my doctors — I became a major hypochondriac. (I guess that’s to be expected though, right?)
It was at its worst when I was going to the gynecologist for the first time. We’re talking about a full-blown anxiety attack in the waiting room. I couldn’t stop crying. See, my dad is BRCA1 positive. For those of you who don’t know, BRCA1 is a breast cancer gene. In women that have it, they have a 45-85% chance of getting breast cancer and 10-46% of ovarian cancer. The odds are a lot higher than someone who does not have the gene.
So I was at the gynecologist to talk about BRCA1 and the chronic pain that I would get around my period. My mind was thinking the worst: what if I have an ovarian cyst? Or another tumor? What if I'm BRCA1 positive and I have a different type of cancer now?
Once the doctor came in, we talked about my medical history. Usually, I’m pretty stoic and matter-of-fact when it comes to talking about my past medical issues, but when I was talking to her, I just started crying. After she looked around at my vagina, she (to my shock) said, “A lot of kids get cancer. Kids younger than you. You do not have an ovarian cyst. I’m not going to give you an ultrasound.”
She proceeded to write down a number on a sticky note and told me she would recommend that I make an appointment for anxiety medication. She handed me the psychiatrist’s information and left the room. I sat there, half naked, in disbelief.
I have a new gyno now, and she’s awesome. She gave me an ultrasound when I talked about my concerns and listened to me thoroughly. I was diagnosed with endometriosis and prescribed birth control to help with the pain.
I understand that with my first gyno, I was being dramatic and her job was not to be my therapist. BUT my issues are that (1) she did not address the abdominal pain I was having and (2) she acted like I was crazy and stupid for feeling scared. As anxious and dramatic as I was, there was something wrong with my body and she did not address it.
The unfortunate fact is that, even with female doctors, women are much less likely to be heard when they see a physician. Their pain is less likely to be believed and their more likely to be dismissed than if we were men. Especially when we’re being emotional, as was in my case.
The biggest lesson in all of this is that I learned how to advocate for myself. And it’s the core piece of advice that I tell other women when talking about health issues. It’s scary to think about confronting your doctor about being rude or dismissive but at the end of the day, no one knows your body like you do. Listen to your intuition — if you feel like something is truly wrong, voice those feelings to your doctor. If your doctor chooses to ignore the problem or dismisses your concerns, keep voicing how you feel or find a new doctor who will address your needs. Tips for self-advocacy and how to be direct at the doctor’s office:
- See the list of questions below.
- Why are you seeing the doctor?
- State exactly what you prepared.
- Make sure there is no miscommunication or misunderstanding with what is going on with your body.
- Ask questions to clarify if you don’t understand something.
Ask the doctor to repeat themself. They are there to help you!
EXPRESS YOUR CONCERNS
- Mentally, how do you feel?
- This can help doctor help ease your fear/anxiety about the condition/symptoms/procedure
BE PERSISTENT / EXPRESS DISSATISFACTION
- For example: “When ____ happened, it made me feel dismissed/unheard/unseen/disrespected/ scared, etc.
- I am still experiencing _____ so I would like to continue to conversation surrounding those symptoms because I feel like something is wrong”
That being said, it’s equally important to not go down a WebMD, Google, or self-diagnosis rabbit hole. When you’re scared about your health it is extremely difficult to sit idly, wait for a physician’s diagnosis, and not solve the problem yourself. There’s a fine line between healthy and unhealthy self-diagnostic behavior. I’ve been victim to the unhealthy side of it many times, and at the end of the day, it’s simply unhelpful. The Internet cannot give you a proper diagnosis, and it will not ease your anxiety until you see a doctor who is able to treat the condition. Here are some tips on how you can use manic searching to ease your stress instead of contribute to it:
- Find holistic/at-home remedies for your symptoms.
- Get over-the-counter medicines that work for your symptoms.
- Research what kind of doctors/specialists treat the symptoms you have.
- Read doctor/specialist reviews.
- Learn more about the condition post-diagnosis.
It’s also important to acknowledge that healthcare can get expensive. There are a lot of out-of-pocket costs and sometimes you can’t just go see a doctor if you’re feeling off. If you’re hesitating to see a doctor, are unsure if it’s necessary, (OR if you feel like it may be your anxiety convincing you that you need to see a doctor,) here are some questions to ask yourself:
(*These are also good questions to answer for self-advocacy purposes & to prepare for a doctor’s appointment!)
- How severe is my pain on a scale of 1-10?
- Is there anything abnormal about my condition? (Unusual coloring, smells, secretions, feelings)
- How long have I had this condition? Has it been chronic? Has it disappeared and reappeared?
- What symptoms am I experiencing alongside the condition?
- When did these symptoms start to appear?
- What am I doing/what kind of environment am I in when my condition & symptoms flare up?
- Is it possible to treat this on my own? (Over the counter meds, at-home remedies)
- If I have tried to treat this condition on my own, has it helped, has the condition stayed the same, or has it gotten worse?