Friday, May 18, 2012

Treatment journey: Not straight, and certainly not quick

There are two main ways to get from my town to the county seat, where I do a lot of my reporting for the newspaper.
One way is mostly on a four-lane major highway. The speed limit is 60 mph. Even when I have to turn onto a two-lane road, it’s wide and well marked and I can make good time.
The other way is mostly on back roads, narrow and curvy secondary roads. It’s a more direct way to get to the county seat, but narrow and sometimes unmarked roads slow down safe drivers. You will eventually get to the county seat, but it will take longer than if you take the major highway.
Some journeys are straight and true, some not. Figuratively, the same could be said for the journey to effective treatment for mental illnesses.

My fantasy journey

I would have begun exhibiting obsessive-compulsive disorder and depression symptoms, which would have drawn concerned interest from my parents, which would have led them to take me to a doctor, who would have referred me to a psychiatrist, who would have diagnosed me and begun treatment.
Admittedly, since I started showing strong symptoms of OCD in the early 1970s, treatments would not have been what they are today. But as the years passed and knowledge of and research into OCD increased, I would have gotten better and better treatment for both the OCD and the depression.
And so, in my perfect dream, I would have spent my 20s, 30s and now my 40s living a life with OCD and depression, but a life not as greatly affected by them.
Yes, it’s just a dream. My treatment journey wasn’t that straight and true one, and I would bet that most people’s journeys aren’t either.

My real journey

I remember being taken to the doctor when I was about 9 or 10. My mother told me it was because I was crying at night and I wasn’t eating a lot. I don’t remember this. But according to my mother, the doctor said that even though it had been my brother who was in the hospital a lot, I had been through a lot, too, with being away from home and having to stay with relatives.
That was the end of that foray into medical diagnosis. The next time I saw a health professional for anything other than a physical ailment was when I was 25 and started seeing a counseling psychologist for my depression.
That was talk therapy. I talked about my life, and she listened. But she also taught me that my patterns of thinking were not healthy and were not a reflection of reality. For example, just because my mother told me I was lazy didn’t mean that I was.
When I was 26, I saw my first psychiatrist and was officially diagnosed with OCD and depression. I started medication, which greatly improved my symptoms.
In the years after that, I was in a little more talk therapy, but I focused mainly on medication therapy. I thought I was as well as I could hope for.
But in January, 22 years to the month that I was diagnosed with the mental illnesses, I decided to try cognitive behavioral therapy for OCD. Later this spring, I started Cognitive Behavioral Analysis System Psychotherapy (CBAS) for chronic depression, which was getting in the way of my OCD therapy.
I am finally on the road to real recovery.

How can we make it better?

What are some ways that we can better ensure that the road to good treatment is more straight than curvy?
Recently, Elizabeth, of Into My Own, reminded me of the importance of being our own health advocate in a great post.
When I worked as a health educator, I became interested in health advocacy because I saw so much need for it.
Advocacy is “(t)he act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support,” according to The American Heritage Dictionary.
Being an advocate for yourself means asking the questions, educating yourself, and getting the care, including proper diagnosis, for yourself as you navigate the health care system.
Being an advocate for others means doing the same thing, but for others.
Being an advocate or even having an advocate may help you get a diagnosis sooner rather than later and may help you get on the road to recovery more quickly.
The following are ways that I have discovered to be helpful in being your own advocate or an advocate for someone else (Note: I use the term “doctor,” but you can insert therapist or any health care professional):

*Research respected sources for accurate and up-to-date information.
*Before you go to the doctor, make a list of questions to ask.
*If you don’t understand something the doctor says, ask for clarification.
*Take notes and/or ask for available handouts about a diagnosis, test, or treatment.
*Consider taking someone you trust with you to the doctor so you’ll have a second pair of ears to listen and take notes. (I realize this may not be desirable or appropriate if you’re going to a psychiatrist or therapist.)
*Find out the best way to get in touch with the doctor between appointments.
*Don’t be afraid to change doctors if for any reason you are not comfortable or cannot build a trusting relationship with him or her.

Was your road to diagnosis and treatment long and winding, or was it more straightforward?
Do you consider yourself to be a health advocate? How do you advocate for yourself? How have you advocated for others?


  1. I knew something was wrong from an early age, but there were far more significant mental health issues in my family, to have time for myself to address mine! I read a great deal before I got help, self diagnosing myself. However, I decided I would see what the professional would come up with. My initial intake, was a 3 hour long ordeal, as both of my siblings have tried to commit suicide. So, they kept me in for quite awhile. Now, from there, came weekly appointment while they tried to figure out what was wrong with me. I was reticent, as I didn't want to believe I had OCD, even thought I knew. I wanted them to come up with the diagnosis! They did! And from there, came medication. Ugh....that was a terrible experiment! So...yes, I think we all have a long and windy road to diagnosis, acceptance, and finally, coping with the diagnosis. Great post! I can completely relate. I only wish, I too had sought treatment at an earlier age. I'm happy you're finding support, I can't seem to communicate enough for CBT to benefit myself.

  2. That is an excellent point you make about accepting a diagnosis. Just because we get a diagnosis doesn't necessarily mean that it's easy to accept it.

    I'm sorry you had a bad experience with medication. It has been very helpful for me, but it's not for everyone. CBT is very helpful with OCD--even if it didn't seem to work, you might consider trying again. But if what you're doing is working, that is the most important thing. Each of us is different.

  3. It took me years to get diagnosed with GAD. I had been through talk therapy, personal growth workshops, 12 Step programs, and more, and yet over the years felt my world getting smaller and smaller, to the point where I could barely leave the house.

    I think that "grace" brought me to the program that made all the difference. One night, after coming home frustrated from a Debtors' Anonymous meeting (my anxiety manifested, in part, with having difficulty making a living), my previous husband asked me what I needed. I said, "I have a problem with anxiety, and that's what I need help with!" I have no idea where that came from, but I then went to look up "anxiety" and found the TERRAP program of cognitive therapy. In just three weeks I was feeling better, and by the end of the 20-week program I was a new person. After all those years of suffering, 20 weeks did the trick!!

    This doesn't mean that I don't have anxiety anymore, though it is less than it used to be. I still struggle at times, and our recent cross-country move aggravated my symptoms. However, I know how to manage it now, and my life is now rich with adventure and experiences.

    I think treatments have improved dramatically. My stepdaughter has found great help from Dialectical Behavior Therapy, which is relatively new in the scheme of things. Even cognitive therapy wasn't around when I was younger and could really have used it. Like you, I wish it could have happened when I was much younger, but my life with GAD has given me the ability to relate to the struggles that my stepchildren have, so it's turned out to be all good. These days, I wouldn't change a thing!

    1. Nadine, I'm glad you found something that worked so well with the GAD. And now you can understand others going through the same thing. I try to do that too. I have heard of Dialectical therapy, but I don't know much about it. You're right--treatments have improved so much, and there are more choices available--more things to fit the differences among people.

  4. Well, crazy enough, I actually diagnosed myself when I was 28. I had previously seen a therapist for some other problems a few years earlier, so when I walked into her office she asked me what brought me back. I told her it was OCD. I actually suspected I had OCD when I was 18. I don't know how I even knew about OCD or its symptoms, but there you go. I always had anxiety symptoms from childhood, just not full blown OCD. The worst part is that when I self-diagnosed in 1996, CBT was available. I knew about it, I knew it was the best treatment around, but I was so afraid of it I simply refused to look into it. I tried talk therapy (useless for OCD) and medication. Unfortunately, the psychiatrist I also saw was not very good and he completely over-medicated me for roughly 4 years. Finally, neither my husband or I could take the medication side effects anymore, so I got off the meds in 2000. I gritted my teeth through the next nine 9 years until I finally got up the courage to do CBT. Although, I wouldn't say it was courage at that point, more like desperation. This time, I didn't fool around. I found a therapist who specialized in CBT and worked at a specifically-OCD-only clinic in Boston. I had to travel over an hour one way to get to her and it cost a decent amount of money, but let me tell you, it was worth it!

    This time, I also made sure to seek out a psychiatrist who understood OCD, plus I've educated myself about medication. Often it is recommended that OCD patients are put on very high doses of meds. Because I am extremely sensitive to meds, that doesn't work for me (hence why I was so over-medicated - frankly, doped up - the last time). My new psychiatrist and I started very slowly adding small increases to my med dosage until we found just the right dose for me.

    This time around, I'm much more educated, I make the decisions (of course with my doctors' input) and I advocate for myself. Much, much better result.

    Sorry I wrote a book here!

    1. Sunny, Write as much as you want to! I, too, diagnosed myself. I was in my upper teens or early 20s when I read about OCD in a magazine. I was floored because I couldn't imagine anyone else having what seemed to be symptoms so individual to me. But I didn't do anything about what I learned.

      I'm probably on the best combo of meds I've been on. But I'm so glad my treatment includes therapy now. That's the key for me, I think--a combination of meds and therapy.

  5. Reading the comments, it's interesting how many people have diagnosed themselves with OCD. Same was true with my son Dan. With the help of the internet, he diagnosed himself at the age of 17. Shortly after that, he told me had it, and the hard part for us was getting the right treatment. So all in all he was lucky to have diagnosed himself at a relatively young age and eventually get the right treatment.
    I think advocacy is SO important. One of the main reasons I started blogging was because I could not believe how many health care providers know little to nothing about the disorder. There are so many "specialists" these days, that they all have their "niche" and often know little about diseases or illnesses outside of it. Nobody is going to care about us or our loved ones as much as we do..we need to do our homework and advocate. Thanks for another great post!

    1. It's amazing that doctors weren't able to provide Dan with the right treatment right away, with all the knowledge available about OCD. You're right--so many specialists with narrow focuses end up not being able to help a lot of the patients that pass through. Thanks for your comment!

  6. Well, while I don't have so much of an opportunity right now to be a health advocate, I certainly did a lot of that with teens when I did juvenile probation, and with students when I taught psychology. I suspect chances are good I will return to that path (only if I'm lucky, part time) when my boys are all in school.

    1. Lisa, We can be advocates for all kinds of things. The teens you worked with as a juvenile probation officer were lucky to have you, as I'm sure your students were too. Do you enjoy teaching?

  7. I tried many doctors and many psychiatrists. I have changed therapist. I have been admitted to psychiatric hospital and until now i never got real help, not from any of those. Nothing helped.
    Thank you Tina for this post, and especially for the little note about how to prepare the visit to the doctor. My appointment is on Monday at 1 pm. I will take these points into consideration. Thank you <3

    1. Nikky, I hope the tips help. Good luck with your doctor's visit! I've been thinking about you . . .

  8. hah, yeah, I have the same fantasty as you do...I still have snippets of things I remember but can't quite place them and how it fits into my healing but I totally agree with advocating for your own health. I think our parents did the best they could at the time-they believed the medical field back then. What the medical field said, that was gospel which isn't anymore becuase we know too much with the internet.
    Thanks so much for your honesty!

    1. Tracy, Yes, our relationship with the medical community has changed, I think. My doctor appreciated me trying to educate myself. Not all doctors do, unfortunately.

  9. Those are great tips on being your own advocate! I always take notes and bring a notepad that I have jotted down questions for the doctor.

    Like you, my treatment journey has been long and curvy.

    1. Elizabeth, Thank you! I have found that even if I think I will remember something, when I get in the examining room with the doctor, I forget things. What really bugs me is when I write it down, put the note in my purse, and then forget to take it out. Ugh! :-)


Note: Only a member of this blog may post a comment.