“That’s not normal” is something I hear pretty regularly from doctors.
From thoroughly convincing myself I have extremely rare disorders or every possible type of cancer, to experiencing scary (to me) side effects of medications, I’m anything but typical, both emotionally and physically, when it comes to health care.
There’s lots of things in the world that cause me anxiety. There’s lots of things that could go wrong. They all make me nervous. Most of these things are out of my control, though. I don’t have a safety bubble of immunity to any of it.
But when I can take control of something, that’s a step in the right direction back to normalcy. For me, at least.
When I heard that there was a genetic test that could give me some insights into genetic disorder risks and how my body may react to a medication, I couldn’t sign up fast enough to get some answers.
The worst-case worries
At any given time on any given day, if there’s anything that hurts, my mind immediately tells me death is imminent.
Headache? Brain cancer, no doubt. Stiff neck? There’s surely an aneurysm coming. Sore spots? Definitely tumors. Weird bruise? It’s leukemia.
This, apparently, is not normal.
My psychologist says I’m a “worst-case worrier” — whatever the worst-case scenario of a situation might be, that’s what I worry about. Every time.
Her top piece of advice for coping with this anxiety is always asking: What can I do about it?
Instead of fixating on the worry, find something I can do to take action, rationalize the fear with facts and reality, calm down my overactive mind, and move on.
So I’m taking the Sanford Chip to help point me toward what’s normal for me, and what I need to do if my genes are not normal compared to everyone else’s.
Do you really want to know?
The old question of “if you could know when you’re going to die, would you want to know?” doesn’t have a right answer. It’s different for everyone, depending on the information they feel they can cope with.
Some people may feel the same way about knowing if they carry a mutated BRCA gene or the genetic predisposition for a rare disorder. They may see it as just a cause for worry.
But I already worry about it. Whether it’s true or not, I believe I have every ailment from now until eternity.
So knowing, for example, if I have BRCA won’t cause me any more worry about getting breast cancer than what I already have. It’ll give me an action plan. It’ll give my doctors more aggressive screening protocols to follow. It’ll give me peace of mind knowing there is, in fact, something we can do about it. Instead of continuing with the worst-case worries.
When the good doesn’t outweigh the bad
Another anxiety-filled time for me is any time I have to take a new medication.
With each new prescription, I’ve learned to ask doctors to explain all of the possible side effects — from mild to worst-case — so, one, I know to expect them and, two, so I can try and talk myself out of believing it’s actually a symptom of cancer.
Whether it’s painkillers or antidepressants, no matter what medication I’m taking, reading through the list of side effects is like reading my future. I may not get all the side effects a medication could result in, but I often get a lot of them.
Sometimes, the side effects are minor annoyances. But not always.
When I got my wisdom teeth out, I was sick for six days afterwards — not from the surgery, but from the painkillers I was given and didn’t know I would react so poorly to.
Triggered by a bad car accident I was in, I’ve had a particularly bad bout of anxiety and depression that my doctors have been struggling for two years to find the right medication to treat. I either don’t respond well to the medication, or the intensity of the side effects I experience outweigh any good it may be doing elsewhere.
It’s been exhausting, and frustrating, for years.
One less cause for dread
Pharmacogenetics, a word I had never heard of until I started to learn more about the Sanford Chip, feels like a piece of the puzzle I never knew I was missing.
With the test results, my doctors will have access to details about how my body will likely handle medications.
Having my doctors know how my body may process or react to a medication before they even prescribe it is like a big sigh of relief to me — instead of holding my breath, waiting for the inevitable “that’s not normal” side effects to kick in.
Now, instead of a trial-and-error approach, they’ll be able to better pinpoint certain medications to avoid, or to try first, if and when I need them.
A stress-free process
Out of the whole process of getting the Sanford Chip, actually getting it was the least stressful part for me.
The website had all the basic info an over-researcher like me needed. I talked about it with my therapist, who wholeheartedly agreed it could both help my anxiety, and give me solid ground to come back to when my mind inevitably started to spiral into panic-attack-inducing hypothetical scenarios.
A link in My Sanford Chart got me started in the consenting process.
I was impressed with the level of detail it went into, covering what it’s testing, how and why it’s testing those things, and the disclosure that this test may not be for everyone. It felt like a good balance of facts, and affirmation that these were results I wanted to know.
Each step of the consenting form pauses for you to confirm that “yes, I understand” or “no, I have questions — methodical and detailed throughout the entire process.
Paying for the test was done right on the same website, and was processed like any other online purchase I make.
The next day, I made a quick detour on my way to work to a nearby Sanford Health lab to take my final step for the Sanford Chip: the blood draw.
Just like anybody else, I don’t like having my blood drawn, but it definitely was not painful or time-consuming, which is about as much as you can ask for a needle-centered visit to a doctor’s office.
What are you going to do with it?
Not knowing where your genetic information goes, or who it may be sold to, or what your DNA may be used for are valid concerns.
I read sci-fi and dystopian stories. I’ve seen Westworld. The world of unconsented use of DNA could be really bad.
And like Westworld’s Delos Incorporated, a private company who nefariously got people to hand over all rights to their genetic makeup, there are some real-world companies that may entice people with “just for fun” genetic results, but later sell your information for not-so-fun, big-brother-level marketing or money-making ventures.
The consenting process of the Sanford Chip assured me of where, when and how my DNA and genetic information would be used:
- Where: At Sanford Health’s testing laboratories, my electronic medical record, and secure health care data servers.
- When: Now, for the genes the Sanford Chip currently tests, and in the future, if I consent to having the data run again for new genes it may cover.
- How: By my doctors, for insights into what my genes are and how they may be affected by medications or hereditary conditions.)
There are a lot of genetic tests out there, and some of them cover things that are interesting, like your ancestry or traits, but not much about your health. Health-related information is all the Sanford Chip covers, and it only covers things that you can do something about.
That firm “what are you going to do with this information?” answer for both me and my doctors was what sealed the deal on deciding to get the Sanford Chip. They test these specific genes because there’s a clear, established action plan to follow if there’s something abnormal about them.
Who has this information matters
Health care organizations face intense scrutiny, oversight and legislation when it comes to patients’ information. Sanford Health must follow the same intense privacy guidelines with the Sanford Chip as they do for all my health care information, which makes me confident in their compliance and trustworthiness when it comes to my privacy.
The results are forever part of my electronic medical record, available to my Sanford Health doctors, and to a team of specialists, if necessary. I take comfort in this, knowing that anyone on my care team will be able to answer my questions about the results, and ease any lingering worries or fears. They’re not a Google rabbit hole, where message boards are filled with fellow worst-casers to amplify my dread.
Having my results from the Sanford Chip shared with and by a professional health care team is my personal best-case scenario. They won’t leave the results with me to try and interpret on my own. They’ll talk through what they mean for me now, and what they could mean for me in the future.
The price of peace of mind
It’s not everyone’s normal to actively seek out genetic testing, which is something that can sound sci-fi.
But my anxiety is far from normal, and the Sanford Chip gives me a way to do something to do about it.
I know that the results the Sanford Chip comes back with won’t be confirmation that I do or don’t have a rare disease, or that certain medications will or won’t ever work for me. But they’re good calculations.
It’s not ambiguous results to cause more anxiety or fear. There is a clear what-to-do plan that my Sanford Health care team can explain to me and follow through on.
There’s a whole bucket of information that’s about to be filled with valuable insights for my doctors to know — and that information is a whole section of my health I don’t have to be anxious about anymore.
This option of being proactive in my care instead of reactive is the biggest relief. Having clear information is much more reassuring than worrying about an unknown to me.
And if I can hear “that’s not normal” any less than I do now from my doctors, the Sanford Chip is worth way more than the $49 it cost me to get some peace of mind.
(The Sanford Chip is a laboratory developed test that is not required to be reviewed by the FDA. Your Sanford Health doctor orders the test and receives the results.)
More stories about the Sanford Chip
- Daring to discover me (with video)
- Sanford Chip FAQs: Q&A and videos
- What does the Sanford Chip test for?
- Genetic medicine raises questions: Some perspective