Another of my fumbling attempts to write about disability:
I have disabling depression. When I’m not medicated, I have constant panic attacks. Leaving the house is an enormous effort. This wasn’t always true — I have had problems with depression all my life, but acute problems that lasted a limited amount of time turned into chronic problems with the same degree of seriousness a couple years ago. I put up with it for about a year and a half before seeking medical treatment.
When I am medicated with a low daily dose of Prozac, I have occasional panic attacks, but I can control them with the use of Xanax. I take half the lowest prescribed dose of Xanax about once a week. Xanax can be an addictive medication, but to be honest, I don’t much like its effects — I certainly wouldn’t pursue them when I wasn’t having a panic attack. When I am having a panic attack, I need the medication to allow me to do even simple tasks. When I’m not having a panic attack, the effects of Xanax hold no interest for me.
I have a few problems getting medical treatment. Most major of these, at the moment, is that my number one trigger for a panic attack is a doctor’s office. I take Xanax before I go in, but my heart still races, and my blood pressure goes very high. My blood pressure is on the high side of normal when I am not in a doctor’s office, or when I have been seeing one doctor long enough to start to feel comfortable with her (which takes a long time).
Unfortunately for me, I’m in a phase of my life where I’m moving a lot, so I don’t have the luxury of having a single doctor for a long period of time. That means, every time I go into a physician, I have a bad panic attack. I tell the doctors in advance that this will happen, and that the high blood pressure is transitory. But, often, they don’t believe me. My very anxiety — the panic attack which is causing the high blood pressure — provides grounds for their disbelief. If I am anxious, then I am insane. If I am panicking, I am incapable of logical thought. I must be unable to tell them the truth.
The last time I went in to the doctor, it was to see a gynecologist for a genital cyst. I had never seen this woman before. She condescended to me; she tried to change me off of the established medical treatment I had established with my last long-term gynecologist; she tried to put me on a medication which is not indicated for me, and which (as I established with my last long-term gynecologist) would involve putting me at risk. When I told her that I had an established treatment plan, she was dismissive. She also manhandled my genitals in a way that was unpleasant — not abusive, but problematic for me.
I am afraid of doctors like her. She was in a relatively powerless position — the cyst resolved on its own — but I am afraid of what will happen if I am dependent on their treatment.
At the moment, I am dependent on someone’s treatment. I need to refill the prescriptions for my psychiatric medications. I’m terrified to be this dependent. I tried to take myself off of the prozac, to see if I could survive without it — once the medication had a chance to work its way out of my system, my worst symptoms recurred. It will take time for me to build back up to therapeutic levels, but the experience confirmed for me that simply ending my treatment is not an acceptable choice for me right now.
I need prozac to help me express the person I am, the person I always was, the person who can leave the house when I choose to. I need Xanax to control the rare, but existent, panic attacks which I have on prozac. These two medications have been successful for me, at resolving my symptoms.
I am terrified that my next doctor will refuse to give them to me. I am terrified that I will run into some philosophical objection on their part – particularly in regard to the Xanax. They’ll decide I don’t really need it, or that the risk of dependency is too great. They won’t listen to my experience with these symptoms, or my knowledge of myself. They’ll look at the person who is panicking, who is afraid of their power, and decide that I am incapable of logical thought.
I have an appointment to see someone tomorrow morning, and I am relatively sure that by the end of the appointment, I will be greatly relieved. She will probably listen to me when I tell her that I already have a successful course of treatment.
If she does refuse to help me, I can make an appointment with another physician. But given my unfortunate reaction to doctor’s offices (which makes this whole thing much worse and more complicated, I confess), every new appointment will be very difficult for me to make, and means another day lost to a panic attack. Insurance complications make this more difficult, since we have to pre-verify appointments with any physician. Seeing a new doctor is not an easy or simple thing.
In the end, even if the process is hard, I am sure that I’ll have my refills. I will have what I need to continue being a functional person. But right now I feel helpless.
And it reminds me of how lucky I am to be able to navigate the system in the ways that I can — without my spouse’s help, I’m sure that I would have less ability (and certainly less ease) to get the treatment I need. I have insurance, and class privilege, and other things. Still, in this particular way, I have experience with some kinds of disability, and I am terrified by the systemic barriers that surround it.
A friend of mine who was recently diagnosed with a very bad spinal arthritis that makes it impossible for her to carry things, or remain in one position very long, was telling me recently that she finds it very difficult to accept that there are things she can’t do anymore, because it reminds her of her vulnerability. That’s the terrifying thing here, being vulnerable, because someone else’s momentary callousness or willingness to put primacy on their preconceptions could have a major effect on lives beyond them.
Commenters, please respect the personal nature of this post.
And then future doctors view your records and see you doctor hopping and think you’re exhibiting drug seeking behavior and refuse to prescribe prozac or xanax. It’s very, very disturbing. My advice is to make your initial appointment w/ a prospective new doctor without your insurance. They’ll usually discount the price for non-insured who will pay right then and there. They get the same money (or a little less than) that they’d get from the insurance company, but they get it now instead of 60 days from now. You get to try another doctor (if you’re uncomfortable w/ this one) without documentation that you’ve seen yet another MD traveling with your insurance.
If there is any way you can swing that, I can’t recommend it enough.
No doubt. When you’re sick or in pain, dealing with obstacles and anxieties about your medical care is even more difficult than usual. Ask Rebecca about the new doctor who wanted to change everything about her treatment plan. A treatment plan that had been more successful than anything she’d tried over the last 8 years. If I hadn’t been there to help, I can easily imagine how much worse her quality of life would be today. Even if you don’t have a spouse or partner, have a friend or family member help you out if you find yourself in a similar position. Somebody who has your best interests at heart and isn’t dealing w/ pain and anxiety is invaluable.
Thanks for putting this out there. Knowing that there are others who have experienced what we have is somehow comforting. I guess it says that what’s wrong is not us.
This post really strikes home for me. I have similar medical problems and similar medication. I’m on celexa for anxiety and depression, and take lorezapram in the occasional event of a panic attack. I too worry about my dependency on doctors. I too have tried to quite all the medicine to end that dependency, only to see all my scary symptoms return.
Now that I’ve moved to a new state and have no insurance, I’m really afraid for what’s going to happen when I run out of meds. It will be next to impossible to find a job if my anxiety and panic reach their full-blown levels again. And how do I find a sympathetic doctor?
Thanks for putting this all out there!
Here is one strategy: If you have had doctors in the past who have listened and understood then if the doctor you are seeing tomorrow doesn’t work go Backwards to the doctors who did work for you. The gynocologist who was a bad fit wouldn’t be transformed into a wonderfully sensitive person if she had gotten a call from your LAST gynocologist but she would have listened hard to what the other doctor said. So if you are finding yourself in a sitaution where you had doctors that worked for you but are now someplace else don’t feel abandoned. If you (or your husband) can call their office and get referrals to doctors in your area and with your coverage or even if you can’t maybe the mere fact of having your files from the old office transferred to the new office would help. A doctor in the past understood, and doctors listen to other doctors.
A second strategy that works in my health plan: email. doctors have extremely limited time to spend with patients so if you are in a system where the doctors have email option, use it. They sometimes focus better. And don’t under-estimate the power of the written word – you can write out your concerns ahead of time, make sure that you are happy with what it says, and give it to the doctor. If it goes into the chart might save the doctor time and reading might be faster than listening if you are nervous about talking to a new doctor.
I don’t know if any of these suggestions will be any use. I am sure that you have thought about them, but I just want to say best of wishes to you that it all goes smoothly, and thank you for having the courage to write about this.
Excellent post.
We often think of disability issues as wheelchair access or employment opportunities but we rarely think of things like the right to obtain and maintain necessary medications or to be considered the expert on how our individual bodies work. People with mental illness or chronic pain should not have to prove that they are “worthy” of medication. And doctors — not to mention the generally public — should understand the difference between dependence and addiction. Do we say that a diabetic is an insulin addict because he or she must take insulin each day? Why should it be different for a patient with an anxiety disorder who takes Xanax as prescribed or a chronic pain patient who takes morphine as prescribed?
People with mental illness are particularly vulnerable to medical prejudice. A study from Australia showed that mental illness patients are half as likely to get needed surgery for heart disease and 80% more likely to die than non-psychiatric patients. While mental illness patients are more likely to develop heart disease, stigma plays a large role in this enormously increased risk.
So thanks, Mandolin, for sharing your experience. This is a serious issue that those with healthy privilege or those with illnesses that are privileged often fail to appreciate.
You didn’t mention whether or not you go to these very stressful appointments alone, but if you’re able to take a trusted person with you, I highly recommend that. That person can be: soothing, distracting, a witness, another pair of eyes and ears to remember the discussion, and a check on how the interaction goes. That latter can, I think, sometimes change the entire trajectory of a meeting even when everything is going well and you’ve written a list of your concerns to refer to and your doctor is all you hoped she would be.
I have found repeatedly that even in the best of circumstances, humans error. And in the case of medical issues, the client always suffers from those errors. As you noted, you would have a much harder time managing all of this without your spouse’s support, but that’s not just a matter of your emotional concerns and panic attacks — it’s a fact of the medical system. Without discounting how your specific medical issues impact your ability to access the health care you need, I’d encourage you (and anyone) to think of being a consumer of health care as a situation where you always need to play defense as well as offense. It’s a fact of the system and of being in a vulnerable state. Do your best to not let anyone deter you from that need or let you feel your defensiveness in this regard is something you’re seeking treatment for. It’s part of the process of successfully getting medical help.
(Hope that made sense. I’m explaining from my experience with very different medical concerns.)
*nods* I spend a lot of time worrying about not being able to get access to the painkillers I need because some doctor might decide they’re too risky in combination with my weight, rather than letting me make that assessment myself. With my current doctors’ practice, I get on quite well, I think partly because I am good at coming across as numerate and medically literate, but I still worry, and I am conscious that not everyone has the privilege of being able to come across in that way. I think the whole prescription system is flawed – people should be able to get any drug off-prescription with informed consent.
Now that I’ve moved to a new state and have no insurance, I’m really afraid for what’s going to happen when I run out of meds.
My suggestion is to find a psychiatrist who will take cash, if you have that amount of cash available or apply for state assistance NOW. Before you run out of meds and it is a crisis. Especially if you need to go on state assistance, which means going to a state hospital or clinic–which will likely be glacially slow.
thank you thank you thank you, Mandolin.
I’m actually going through something very similar right now and Jake Squid is exactly right when he says its oddly comforting knowing “that what’s wrong is not us.”
I’m having some serious (at least to me) mental problems right now that have been getting steadily worse in the past several years, but even with good insurance I’m terrified of going to a new doctor to find out what’s wrong because that last doctor I went to completely ignored the very specific pain I told him I was worried about before starting a trip where I’d be in a different city every day and not have access to my regular doctors. Yeah, that symptom he ignored ended up putting me in the ER just a couple days after my trip started.
So thanks once again for sharing what you’re going through, Mandolin. It means a lot to realize I’m not the only one.
I didn’t used to bring someone in with me at medical appointments, but I did ask my spouse to join me the last time I was at the doctor’s office (the aforementioned gynecology appointment). Although I was unhappy with the way the appointment went, I suspect it would have been worse without him sitting behind me.
I find that being articulate and having some degree of medical knowledge (often obtained by consulting with friends who are doctors and nurses before going in to a doctor’s appointment) is – for me at least – a double-edged sword. Some doctors I’ve seen have reacted to it well; others seem to be upset by me, as if I’m challenging them by knowing something about my own condition.
Thanks for the advice Dianne- I often put off taking care of my health issues until crisis hits, and this is a lesson I need to learn.
And thanks again Mandolin for this discussion!
Don’t I know it. It used to be worse. I think doctors are getting used to the idea that the internet is there and loaded w/ info and that a moderately intelligent patient can locate good and accurate information. Another thing that helps is getting old enough so that most doctors are your age or younger. The change in the Dr./Patient relationship wrt respect has been noticeable and, honestly, stunning.
I agree with Kay Olsen… I suffer from similar issues in addition to chronic pain. Me and my husband were married 11/2006. I switched to his insurance 1/2007. I had been seeing the same physicians for over 5 years and had detailed history under my arm for each of the new physicians I saw. But I’m sure that my husbands enormous presents (6’5″, 275# and the FD t-shirts help too) had a lot to do with it also. I will not see a new doctor with out him. If he’s not available and I have an issue, you bet he’ll be at the next visit. He doesnt have to say anything, but he always asks questions he has and the doctors see that there’s someone else besides me aware of my conditions. He paraphrases his interpretation of my medical conditions and inquires when he has questions. I know I’m EXTREMELY LUCKY to have him in my life!!!
To summarize, I hope that everybody has someone they can tell everything to and trust enough to include them in their most personal needs (such as yours). Almost every woman is aware that men receive different treatment. Women are emotional, etc., etc. Blah, Blah, Blah. Bring your spouse with you and see if there’s a difference in how you are received. It works for me!
Shannon, I’m not sure: Is your husband there for your personal support or to beat up the doctor if he says the wrong thing?