It is pretty standard for a doctor to refer their patients to a specialist when they are stumped or their knowledge is limited. It is a great practice to get better more specialized help. However, when a patient has a chronic illness, especially if it is one that isn’t well known, this can be a problem. Doctors refer patients to specialists and then the specialists refer them to even more specialists. The number of specialists a patient is expected to see can increase exponentially. Eventually, this cycle snowballs out of control. I call it the specialist snowball effect.
If I went to every single specialist that was suggested to me this year I would have been to about 32 doctors. The average person doesn’t even see 32 doctors in their lifetime!
I made an approximate diagram from my fuzzy memory below. I actually think I forgot to put some of the recommended doctors on their so my number may actually be lower. You can start to imagine why seeing that many doctors may be a problem. This specialist snowball effect is draining physically, emotionally, financially, and is time-consuming.
Seeing that many doctors is ridiculously exhausting! The worse my health is that year the more doctors are suggested to me, but this also makes it harder to see to them. People with chronic illnesses already get fatigued easily. The average doctor appointment drains us even more than most people.
To begin I have to figure out transportation since I usually can’t drive. Just the drive alone is fatiguing. I deal with worsened back pain along with car sickness on longer car rides. Then, once I actually get to the appointment I still have to stand in line to check in, wait (sometimes for hours) on uncomfortable chairs, and do tests that make me feel miserable. Then I usually have to go to the pharmacy and get my prescription filled. Which means more driving, more standing in lines, and more sitting. Often the days I go to the doctor I have too little energy to do anything else the entire day.
Check out the spoon theory to better understand.
If each specialist was helpful it might be worth it to see 32 in one year. However, the reality is that the majority of my doctor appointments don’t improve my health or offer realistic, helpful solutions. Waiting months for an appointment to talk to a specialist then still having to explain the basics of your condition is emotionally draining.
“What is POTS again?” -the super special specialist I waited 7 months to get into
Sometimes these new doctors can be straight up rude, neglectful, or cruel. Chronic illness means having to prove how bad you are feeling during every appointment and worrying what judgment this new doctor will pass on you. Some patients get anxiety or depression from these interactions which is truly understandable. Anyone would feel desperate when the one person who could help instead turns them away or belittles their problems.
People also find that retelling their health history over and over means reliving traumatic events over and over. For example, I often feel haunted by the blood clot that nearly killed me and destroyed my dreams of being a doctor. I also had one surgery where I stayed awake despite anesthesia and was in horrific pain for the duration of the procedure. The doctor didn’t believe I was vividly awake despite my screaming. I still get nightmares. I hate remembering these experiences. To do so I have to recall the doctors who wouldn’t take me. I have to remember how alone I felt because they didn’t believe me. I have to remember the physical pain and the emotional pain of nearly dying because no one would listen to me or take me seriously- doctors and loved ones.
It has gotten easier now that there are a few years between now and those experiences. However, it never fails to make me sad and anxious when I recall it that my new doctor may do the same and not take my symptoms seriously or listen to me.
It is already insanely difficult to hold down even a part-time job with a serious chronic illness. When constant medical tests, new doctors visits, and physical therapy are added to the equation patients have to have an incredibly understanding boss to pull off keeping a job. Unfortunately, there are very few bosses that are understanding of chronic illness.
On average, I have to set aside two hours for a doctors appointment or three if I have to get a prescription filled afterward. For fancy specialists, I sometimes have to set aside 4-5 hours! And that is without anything going wrong. When you see 32 doctors a year there is a higher likelihood of scheduling errors due to just the sheer numbers of appointments made. I’ve had front office professionals lose my appointments, forget about me, or have me scheduled for a time I would never schedule an appointment for. At a recent back specialist, I had to wait three and a half hours just to see a physician assistant.
If I saw every doctor I was supposed to twice a year (most I would see far more than this) and physical therapists once a week (which I would also usually see more than once a week) I would be at doctors appointment about 14 straight days and nights this year.
Keep in mind, that doesn’t even account for all the medical tests that each doctor would order. This number doesn’t account for travel. It also doesn’t account for the time patients are expected to spend on the phone on hold, being forced to be the inefficient middleman between their doctor and pharmacy, or simply trying to reach their doctor.
Most jobs don’t even allow 14 sick days, and obviously, I couldn’t be at doctors appointment 24 hours straight a day! The specialist snowball is out of control and swallows patients like me whole leaving them with little time outside of healthcare. It is simply unrealistic to expect patients to spend 330 hours a year to see specialists.
Without insurance in the USA, the cost to see 32 specialists twice in one year would be around $39,000. That is the cost before accounting for transportation, medical tests, and medication. Most people with serious chronic illness can’t even make $39,000 a year let alone $39,000 plus enough money for food and rent. Referring patients to this many specialists a year not only guarantees they cannot hold down a job, it also guarantees they will go into deep debt quickly that they will likely not be able to climb out of.
Even with insurance, seeing 32 doctors a year can be too expensive for patients to be able to afford medical care, food, and a place to live. A lot of deductibles are $10,000+ which really adds up year after year. Even patients in countries with socialized medicine can have trouble paying for a lot of doctors appointments due to transportation and losing out on money while working.
A few years ago I had a breakup during which my ex-boyfriend claimed I wasn’t trying to manage my condition because I didn’t see every doctor I was referred to. He implied that my poor health was just due to me not trying hard enough. It was really hurtful that he didn’t trust my judgment about what I could handle emotionally, physically, and with my resources at the time. He didn’t trust my judgment that seeing those specialists, ones that I would have had to explain my condition to, wasn’t going to help me. Sometimes the right choice is not to see every specialist and sometimes it is. That needs to be the patient’s choice.
The choice in what doctor someone sees varies for every person and only the person being treated and a doctor they trust should have a say in it. I hope that this article has helped to clear up why someone might not go to see all the specialists suggested to them.
I think this is important for doctors to realize the consequences of the specialist snowball on chronically ill patients before referring them to a million specialists. At a certain point, seeing more specialists isn’t helping their patient. It is making it so they can’t hold down even a part-time job. They live in doctor’s offices but don’t get very far in managing their conditions or increasing their quality of life. Their quality of life is worse because they are getting no fun and are drained- emotionally, physically, and financially.