In addition to having PCOS (Polycystic Ovarian Syndrome) myself, I see a number of PCOS patients, so I often write about what’s involved in managing PCOS. We tend to focus on direct care of the PCOS patient, and forget about all of the other medical issues that one must tend to regularly, which greatly add to the medical burden, such as:
- Family member’s appointments – you may have to make the appointment, drive someone to the appointment, pay for the appointment, or actually sit through the appointment or treatment. In the case of certain parties, you may even have to physically pry the person out of his or her lounge chair. This is magnified when dealing with someone else’s chronic illness, such as an asthmatic child, or a parent with cancer;
- Medication management for children or elderly family members, which can be complex and confusing, especially when you’re managing your own medication and supplements;
- Dental care – ranging from minimally bothersome to all-consuming, depending upon what you start life with, and how you take care of it;
- Routine check-ups (Oh…yeah…right?! We’re supposed to go the doctor, theoretically, once a year, just because) with someone who is supposed to “know” you so that they can help when you’re having an issue;
- Cosmetic dermatology/plastic surgery (if one chooses to indulge in such things, which can be addictive, time-consuming, expensive, painful, and require a fair amount of discretion or story-telling to disguise);
- Coordinating care between physicians, hospitals, and pharmacies, because it seems like lab results and x-rays always go missing (somehow the bills never go missing, do they?), the mail order pharmacy refuses to fill your prescription as currently written, and you are quite certain that the blood draw you had last week will suffice to answer ALL of THIS doctor’s questions so no, thank you, you do NOT wish to have another blood draw;
- Tending to non-PCOS medical conditions (allergies, asthma, broken bones, etc.), all of which require another set of doctors, treatment protocols, diagnostic procedures, and medications or support aids (glasses, hearing aids, orthotics, and so on), and all of which take far too much time and energy to implement effectively and routinely; and
- Even the veterinarian! Yes, dealing with your pet’s medical issues so closely parallels dealing with your own medical issues that it can be quite stressful for many PCOS patients, as it brings up feelings of loss of control, challenges in understanding the choices, and frustration about not being able to adequately or appropriately resolve a problem. Plus, veterinary clinics smell medicinal, which can trigger some bad memories.
Amidst all of this, you’re expected to work, and take perfect care of your PCOS, which already makes you a little high maintenance if you’re doing it “right.” And, oh yeah – look good, be socially, politically, and spiritually engaged, and perhaps even be creative, philanthropically inclined, and a good and present friend. WOW. I’m exhausted just thinking about it – yet this is our reality as women today.
After years and years of dealing with the medical roller-coaster, for myself and for and alongside others, I’ve come to realize:
- Doctors often think their time is more important than yours; plan for it.
- Pharmacies are really, really picky – know the basics, and check your prescriptions before you leave the doctor’s office. Make sure things are legible, and contain the correct date.
- Your insurance company definitely doesn’t care, no matter what they say in the nice ads that run during open enrollment time. Be polite, but treat them accordingly. And know that, if you utilize a lot of services, you are probably going to spend a fair amount of time on the phone with them.
- At some point, someone (a doctor, a nurse, an x-ray technician, etc.) will say something insensitive, stupid, or cruel. Viewing this as an opportunity for spiritual and character growth is far more productive than engaging in rage.
- Doctors often have no real idea what their colleagues are doing to/with your body, so keep your own medical records, do your research, ask a lot of questions, remind them pointedly, and take the time you need to adequately explain your symptoms and make sure you’re clear about the treatment plan.
And if you’re still feeling overwhelmed by the plethora of medical information, advice, procedures, and protocols, ask for some help. Poet Mary Oliver writes of “your one wild and precious life.” I say, this is your one precious body, and it merits your full, loving, and respectful attention, even in the midst of a medical storm like PCOS.