Dear Cary,
When I was 18, I had my first kidney stone. I had lithotripsy for another at 19 and a very serious bacterial infection in my kidney in between. I am now 25, and have spent seven years with intermittent pain and urinary tract infections. In the past year, the pain has gotten to the point where I experience it in various degrees on a daily basis -- sometimes it is so bad I just want to cry. On top of this, I have gone through a series of doctors who have all doubted I have any problem at all -- the "stones" don't show up on CAT scans and they can't find any other reason for my pain. I have been called a drug seeker, and told I am making it up. I know some of them -- male urologists -- think they are dealing with a hysterical female.
I have finally got a diagnosis from a new primary care physician and gynecologist of interstitial cystitis (pelvic pain/urinary problems) with kidney stones. These doctors at least believe me -- when I have days of pain, followed by voiding debris, it seems the logical explanation. We are proceeding slowly toward more complete treatment -- because of the seven years of missed diagnosis and rude doctors, they are making sure others I am referred to are aware of my condition and will be sympathetic toward it. We are still trying to get to the root of the stones, and specifically why my pain has only ever been on the right side of my body. They've also referred me for pain management, which is going to be a huge relief.
My problem comes from friends, my boyfriend, and relatives -- specifically my mother. They have been supportive and helpful during these times, especially when I haven't been able to be a pleasant person or reciprocate their kindness immediately. But now many have started focusing on my use of painkillers.
When I hadn't started a drug regime for my IC, I was taking three Lortab a day. My mother even went so far as to count my pills and lecture me over the phone about being a drug addict. I now take tramadol for daily pain, and have Lortab for when things get really bad. Many people ask how much I have taken, express concern over the number of pills I use (I never exceed doctors' recommended dosages), and make comments about how they are afraid I have an addiction problem. I also suffer from anxiety -- and this only makes it worse. I am very aware of the danger narcotics pose. And I suspect I might have some symptoms of addiction, such as getting overly fixated on getting more pills when I am running low. But this is because my pain is under-managed. All I want to do is feel normal. I've tried to explain that pain medication is part of my treatment, but people seem to take such a sharp view toward the drugs. My mother is a nurse and makes comments about the "addicts" in their office who get 90 Lortab a month (what I used to take, meaning three a day). My boyfriend is always inspecting what pills I am taking, asking if I really feel that bad, and saying he doesn't like it when I'm "stoned" on my medication.
Obviously, there is no way to not have these people involved -- they support me through all my trials, pains and rough spots. But I can't deal with the questioning and accusations anymore. When I tell them there is nothing wrong with taking pills as prescribed, they think it is my endorsement of them. They tell me I need "help."
I do need help. I need proper medical treatment for my condition. I need to get better. And until then, I am going to use painkillers so I can lead a normal life. Despite these difficulties I've maintained good grades and have my dream job. I have friends, relationships, hobbies -- but in order to enjoy these things, I can't be in excruciating discomfort. How do I deal with this situation?
On Meds, Not a Junkie
Dear Not a Junkie,
Since I'm not a doctor, let's talk about this as a relationship issue. Let's just say that in your relationships with people, they keep interfering in something that is basically none of their business. You are looking for a way to draw boundaries, or say no, or get some control over a part of your life.
There is an area of your life that you want control of. You don't want to discuss it with certain people.
There are ways to do this. They range from blatant refusal to polite refusal, but they are all about refusal. You have to refuse.
How are you at refusing? I'm betting you're not very good. Neither am I, frankly. I've got a little note in my wallet that reminds me to think before saying yes. I also tend to disclose too much. I like to talk about my life but then find I've disclosed more than I'm comfortable with and then people give me advice and question my judgment and then I get resentful and start to sulk. You don't want to see me sulking. It's unpleasant to behold. Yeah, I've got boundary issues! Like right now, already, see what happened? We were talking about you and all of a sudden it's about me. That's a kind of a boundary thing, too: I'm trying to say I identify, but then I'm also switching the territory.
So let's keep talking about you.
One way to draw the necessary boundary is to have a blanket statement that you use on all people who are not your doctor. You might say something like, This is a medical issue and I only discuss it with my doctor.
It may sound weird at first. People may make a joke, or react with anger. Keep your calm. Don't give in but don't explain yourself either. Explaining yourself (I've learned this with salespeople) just gives them an opportunity to overcome your objections. So, just say no.
The idea is to have a stock policy you adopt with everyone, even your mother, that you just don't discuss your medical treatment with people who aren't your doctor.
Now, I have a family. I know about families. You're supposed to play your part. When you make boundaries, you're sort of changing the rules. You're saying, I don't really like my part that much. But they like your part. It's the part they want you to play. They can't play their part if you don't play yours. They don't like it when you change the script. So be prepared. Stand your ground. Quietly stand your ground.
Just make it a blanket statement. And then go to the movies.
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