For most patients with serious diseases and illnesses, doctors are our calm in the storm. They are the pillars for which we lean on when our resolves are shaky and our optimism needs a recharge. We put a lot of faith in our doctors, especially if they are specialists, working on our main concerns, looking for a cure.
But what happens when the people we put so much faith in fail us? Who do we turn to when our pillars start to fall?
I have a chronic pain disease, as most people know. Unlike many patients with Rheumatoid Disease, I don’t just rely on 2-3 doctors. Most RA patients usually have a main doctor or PCP (primary care physician), a Rheumatologist, and maybe also a pain management doctor, for those with severe pain.
I have 14 doctors whom I see at least on a monthly basis. I won’t bore you with all the titles, but besides the first three I mentioned I also have an Oncologist, a Pain Therapist, a Podiatrist, and an Infectious Diseases Specialist, just to name a few. They are my team, and the people I rely on the most to keep me healthy and keep me alive.
Over the last year my illness has taken on a life of its own. My disease has become extremely aggressive and has stumped even my primary doctors. No one is quite sure which route to take as my body continually rejects rheumatoid arthritis medications and pain relievers. The danger in this of course is without proper medication I could get even sicker and be consumed by even more pain to the point where I could be wheelchair bound, bed ridden, and the very worse case scenario… die.
It’s been a very intense and scary time. About eight months ago some of my doctors realised the pain meds I was on were just not cutting it and referred me to the next best course of action: an intrathecal pain pump. The pump would effectively be healthier than me chomping a bunch of oral opiates each day to control my pain. It’s surgically implanted in my hip with a catheter that attaches to my spine and directs liquid pain medication directly into my spinal fluid. It’s a much more controlled delivery method, it’s safer, and it’s healthier on my body.
Unfortunately, since I don’t have social security yet, and the access to Medicare that goes with it, I’m on state funded insurance. And a lot of doctors, especially the specialists, do not accept that form of insurance. This puts me between a rock and a hard place. Obviously I need the help, but it’s hard when that help is severely limited.
Where my pain therapist is concerned, however, I got really lucky. He took my case on as “charity” and is one of my best doctors. Not only does he help me with dealing with the psychological aspects of chronic pain, but also my mortality, how I interact with others, and how to stay optimistic when every part of my body is telling me to give up. He even goes out of his way too help refer me to other doctors, and introduced me to my Social Security lawyer.
Included in this group of referrals was a doctor I met with yesterday. At first, no doctors were willing to accept my insurance. My therapist spent many days and hours on the phone calling offices, asking doctors to take my case, before finally finding one. He of course wants the best medical care for me and sent me off happily to my evaluation, certain that a good outcome was imminent. He couldn’t have known how wrong it would end up.
A big issue I have faced often with my disease is that it’s an “invisible illness”. Unless I’m using my cane, or someone looks closely at the inflammation in my hands and feet, you can’t tell that I suffer from a severe disease. I look totally normal when I’m in horrifying pain. And Rheumatoid Arthritis is a fickle disease. You never know which days will be your bad or good. I was in the ER on Saturday, laying there thinking I was going to die, and on Tuesday I woke up with minimal pain. Which is what the referral doctor saw when I went in for my consult yesterday.
Now when you meet new doctors you always hope for the best. You hope the doctor will be understanding to your condition, see the pain you’re in, and evaluate accordingly. However, there are also doctors, like in any other profession, that become jaded. And in the chronic pain world, this can be due to scam artists. People who say they are in pain but are just looking for drugs, and their next fix. People who cry wolf, begging for sympathy, who either aren’t sick, or are but talk up their symptoms to get better quality meds and or attention. These kind of people ruin it for patients like me.
Unfortunately, the doctor I met with yesterday, was of this jaded variety. She judged me within ten seconds of walking in the door. Her manner was rude, mean, and ineffective. She stressed many times that she didn’t think I was as sick as I stated, only because I happened to feel good that day. There were many thinly veiled references to why I wanted stronger medications and she didn’t listen to anything I had to say. I left the office feeling used and abused. No patient should have to feel belittled by a doctor whom they are seeing for help. She made me feel dirty, and it was very clear she thought I was some sort of heroin addict.
When I left the office I was in such a state of shock that I couldn’t talk. I walked outside and proceeded to take great gulps of air, trying to still my shaking hands and calm my rattled nerves. I drank my entire bottle of water, feeling like my mouth was sandpaper. And finally when I had recovered, I was livid. How dare I be talked to like I was some common criminal, and not a seriously ill patient with a severe disease. And by a medical professional who specializes in chronic pain no less. I was beyond disappointed, I felt shame for that doctor.
We put so much faith in these medical professionals, because they have fancy degrees on their walls, and they worked the time to make it as doctors. But a MD certificate on the wall does not guarantee greatness, and it certainly does not guarantee a good attitude. As patients we have to remember that while they often hold our lives in their hands, they aren’t gods. They are people just like us. And just like the rest of the population, there are definitely some bad seeds, and we need to remember that.
Please visit my donation page if you wish to help support me or share my story with others: Christine Lilley’s Life Fund