Michele Kleinmann

@michele-kleinmann | contributor
Michele Kleinmann is vice president at a healthcare communications consultancy. She lives with her husband and sassy 2-year-old daughter in New York City.

Why Medical System Is Broken for People With Chronic Pain

This Pain Awareness Month, I’m going to say something that’s been said before, but bears repeating. Our health system is broken, especially when it comes to treating people with chronic pain, or any chronic condition for that matter. In the past year and two months, I have been to more than 15 doctors in my quest to find adequate treatment for my facial pain, or ways to handle the side effects of both the pain and the medication. That’s not even counting the complementary and alternative treatment providers I see. And I’m aware that the number of providers I’ve seen probably pales in comparison to those who have been in pain for much longer than I have. In my experience, physicians have been so specialized that they are unable to address more than a piece of the puzzle that is my pain. The referrals I receive are rarely helpful, so I spend my time (and my family’s time) researching health care providers, filling out onerous intake forms, and scheduling appointments — which are usually only available Monday through Thursday, during working hours. My providers have rarely communicated with each other (even though I’ve consented to this communication), and their opinions on treatment options are often conflicting, leaving me to search the medical literature and make my own decisions. Basically, no one seems to know “who’s on first.” I often have to jump through hoops and deal with disgruntled office staff to get copies of my medical records or tests, many of which cost money. I shuttle these between appointments, along with a list of my medications and dosages. And yet, my medications are often recorded incorrectly, prescriptions aren’t necessarily called in on time, and interactions aren’t always checked. Don’t even get me started on health insurance. Luckily, I’m fortunate to have a pretty good policy, but there’s always some excuse as to why a visit or medication wasn’t covered. Fairly standard tests and medications often require pre-authorization, and I have to follow up with the insurance company or my doctor’s office (or both) to make sure the authorization is obtained. Even if I’m going to pay out-of-pocket for one procedure, I can’t have that procedure during an appointment that is covered by insurance, requiring me to schedule another appointment altogether. Alternative therapies like acupuncture, which is one of the few things that seems to help me manage my pain, aren’t covered at all. Even for someone who is highly educated and well-off financially, all of this can be a daunting task. What happens to the millions of other Americans who may not be in my same position? What happens to those who aren’t able to take off work for doctors’ appointments, aren’t able to pay out-of-pocket for therapies that help them, and don’t have the tools or time to make sure their medications and care are being managed correctly? Unfortunately, I think I know the answer, and it’s unacceptable. A version of this story was originally published on The Huffington Post.

Why I Don't Judge Alternative Pain Relief Treatments Anymore

I used to secretly (OK, sometimes not so secretly) roll my eyes at people who poured money into alternative therapies or swore by specific diets or vitamins. If there wasn’t robust medical literature to back something, I wasn’t buying it. That is, until I found myself buying miso soup on a 100-degree day for the potential benefits of seaweed on my neuropathic pain (as advised by my acupuncturist). Or until I found myself falling asleep every night to my pain relief hypnosis app. Or until I found myself calling the compounding pharmacist, who I’m on a first-name basis with, to ask whether he had any calf-liver pills. That must have been a sight — me standing on a busy street corner yelling into my phone, “C-A-L-F liver, like the cow.” Ultimately, I didn’t proceed with that one, but that’s beside the point. The point is, I now understand that when you’re desperate for pain relief, you’ll try just about anything. That’s not to say that I don’t still immediately go to PubMed or “Doctor Google” to research whatever has been proposed to me (once a skeptic, always skeptic-ish), but I’m a whole lot more willing to try things. I don’t care if the relief I might find is only due to the placebo effect. The placebo effect can be powerful and, at this point, I say bring it on. Moving forward, I will try my best to refrain from judging others’ regimens, however strange they may seem. I will instead hope that they are getting relief from whatever it is that plagues them. And I ask that next time you see me buying copious amounts of blueberry juice while on the phone with my acupuncturist, you do the same (hope I get relief, not buy blueberry juice). This blog was previously published on The Huffington Post.

Feeling Like You Don't Have the Right to Be Upset About Chronic Pain

As I lay strapped to the cold, hard table, the doctor prepped me for my third nerve block. With the drapes positioned over my face, I couldn’t see anything other than a sliver of the ceiling. Nervous and upset, I tried telling myself to put things in perspective. It could be so much worse. I’m not having a major surgery. I don’t have as grave of a diagnosis as others. My daughter is healthy. Maybe I don’t have a right to be so upset. After the procedure, the doctor took great care in applying my bandages. She apologized multiple times for not having smaller bandages and for any bruising I might have on my face. I told her it was OK — vanity had gone out the window at this point (which, looking back at it, isn’t exactly true). Then I asked her if she thought my neuropathy would ever get better. She said she couldn’t promise that I’d ever be pain-free, but she hoped we could get it to a tolerable level. Still lying face-up, I held back the tears. The doctor placed her hand on mine and said, “It’s OK. This has been hard on you. You’ve been going through this for a year. I can see now how you’re trying to hold it in. Facial pain is one of the worst pain that exists. You’ve been brave.” It was then that the façade started to crack. I cried as she blotted my face with tissues. But part of me was crying because I was thankful. I was thankful for the doctor’s actions and words. I was thankful for her empathy and compassion when I know it’s easy to dehumanize patients in the rush to make the next appointment. I was thankful that she acknowledged my pain and, by doing so, validated my feelings. Yes, it could be worse, but living with pain on a daily basis is my reality. While I’m trying my best not to catastrophize it, I’m allowed to feel it.

Letter to People Who Tell Woman With Neuropathy to Smile

It happened again today. As I was packed into a 6 train that was stalled in the station, a man looked up at me from his seat and said “Excuse me, you lost your smile.” Obviously satisfied with a line he must have said a thousand times (and no, it wasn’t a pick-up line as he was seated next to his wife), he repeated himself when I failed to acknowledge him. I made brief eye contact and gave him a half-hearted “Yea,” before looking down again. It’s happened before. Sometimes when I’m rushing to or from wherever I need to be, a construction worker or a passing stranger will holler something to the effect of “Where’s your smile?” or “It wouldn’t hurt to smile.” These people may think they are cheering me up, or they might just be ribbing me for looking like a sourpuss. But what they don’t know is that I’m not smiling because I’m in pain. While I may look fine, I’m suffering from an invisible illness. For the past year, and on this particular day when I “lost my smile,” I’ve seen doctor after doctor and taken medication after medication (21 pills a day now to be exact) for something called neuropathy (nerve damage) of the trigeminal or mental nerve. On a daily basis, the pain in my lower jaw/chin area ranges from a deep aching to a tingling, burning, sharp, stabbing pain — sometimes all at once. The pain usually escalates as the day goes on, sometimes ending at an 11 on the pain scale by the time my husband and I get home from work and begin the herculean task of getting our 2-year-old to bed. I regularly burst into tears at night after trying to conceal my pain at work or in social situations. I cry not just because of the pain, but also because of the effects it has had on my life, including the potential inability to have another child because of all the medications I take. I know there are a lot of people like me out there — people who look “normal” but are suffering from intense pain — whether physical or emotional. So before you make a sarcastic comment to a stranger on the subway, just remember that you never know what they’re going through, and by highlighting their unhappiness, you might be exacerbating something they’re trying desperately to hide. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.