Tuesday, August 20, 2013

Depression, Clinical Trials, Healthcare and the World We Live In

Tomorrow is my last day in a long chain of clinical trials. This odyssey began almost 3 years ago, and I have been in 3 different trial and taken at least 3 different medications, likely more. I am actually a little afraid of not being on a clinical trial, even though it seems I may have finally found an antidepressant that is a good match for me because I am finishing the current trial and there isn't a new trial that I am a fit for right now.

I first explored the idea of joining a clinical trial because I am diagnosed as clinically depressed (also called Major Depressive Disorder), I don't have health insurance--and haven't had it since 2006, and I know my depression well enough to know it was time to be on meds again. I have also always been interested in clinical trials and how they work, and thought that contributing to a better solution for people suffering as I do, even if it didn't mean a solution for me, would make me feel good.

Being launched out of clinical trials scares me because participating in one almost made not having health insurance manageable. I was regularly receiving pretty thorough physicals, including EKGs, monitoring of my blood pressure, and various blood tests. I also received a full physical at least once during each of 3 trials, which included a full blood work that they shared the results of and even helped interpret them, even for aspects that had nothing to do with the possible side effects of the various medications. I actually feel that my health has been better monitored in the past 3 years than any other time in my adult life. They also were there to help me when I had a couple of medical issues and needed diagnosis and medication.

Participating in these studies has really helped me to embrace my depression and how it effects me. I am very grateful for this. We live in a society that does an extremely poor job of handling depression. I have been very open about my depression for quite some time. Not in a search for pity, or as an act of pride, but because I think it is something we need to talk about more openly, and more often. A few things I find really frustrating...

  • Confusing depression with sadness. So many people, when they hear of my depression, make suggestions as to how they handle it when they are sad. And yes, some of those things might help for a brief period of time, or might help alleviate some of the problems. But just like you can't cure a sinus infection by treating it as you would a cold, you can't help a person with depression by "treating" them for sadness. Sadness is usually about a specific struggle, or experience, of set of struggles or experiences you are dealing with and may be a part of depression, but depression carries with it the added "bonus" of having a brain that doesn't process certain important chemicals properly.
  • Thinking that depression is just "major sadness." Sadness is only one of many problems people with depression experience. Some of the other symptoms I battle with are insomnia, tiredness, lack of motivation, poor concentration, and pain. Fun, huh? Combining all these things with a feeling of unhappiness, or a least a sense of not being as happy as you should, and often an inability to pinpoint a cause of that feeling and therefor deal with it, can make life, and all of the things that need to be accomplished, really difficult.
  • Assuming that everyone who suffers from depression is suicidal. And I don't say this to invalidate the large number of people with depression who are. But I, thankfully, am part of the lucky group who doesn't deal with suicidal thoughts--something I personally think will eventually be linked to genetic differences. However, there are numerous times someone has assumed I am on the verge of killing myself, and although I certainly appreciate the concern, it can also be hard to spend much of your time around a person or people who refuse to accept that you aren't just saying you aren't requiring that type of concern.

I think that many of these things are not just wrong, but dangerous. Dangerous because if someone suffering from depression--someone who truly needs help beyond having a nice jog, or a relaxing bath--has their concerns invalidated enough by the people in their lives they may choose not to seek help. If someone is brave enough to talk about their depression with you, the most caring thing you can do is listen, with an open mind free from assumptions.

I find myself regularly angered by the state of healthcare in our country. I am a hardworking, tax paying 43 year old woman. It isn't okay that I cannot afford healthcare. I have spent so much of my time over the past seven years worrying about getting sick that I am surprised, and thankful due to my lack of healthcare, that I have not given myself an ulcer. Taxes pay for so many things that don't benefit me or almost anyone, including huge salaries for politicians that retired years ago and are still receiving healthcare. If my taxes pay for their healthcare why shouldn't they also ensure that I have it? This isn't a Republican problem or a Democrat problem, it is a HUMAN problem. The Declaration of Independence speaks of the inalienable rights of life, liberty and the pursuit of happiness. I think it is pretty much a no-brainer that my health is connected to the first and third item. And, seriously, do we really think a better option is having a bunch of people running around without the ability to pay for potentially required procedures? Or to force people with contagious illnesses, that are not rare and are quite easy to catch, such as strep throat, mono, chicken pox, and so on to not receive treatment and instead walk around spreading their illness? And, back to the topic of depression, why would anybody fight a solution to creating a situation where people who need readily accessible meds to treat depression from having the ability to get them? You'd think drug companies and doctors would be fighting for the chance to have more patients, but no...

And these two things lead to one of the saddest things of all, and that is self-medicating. So many people out there abusing drugs and/or alcohol are doing so in a vain attempt (whether it be a conscious choice or not) to feel better or different than they are currently feeling. I have a couple of people I am close to who are doing this, and it isn't getting them anywhere and is hurting the people in their lives too. It is just so hard to watch, and I wish so much I could help steer them in a different way. I have tried many times to properly convey to them how helpful I have found some of the meds I have tried. Some of them may have chosen drugs or alcohol over antidepressants at least in part because of a predisposition to addiction. But some fall in to self medicating because it feels like the only thing they have access to. And sadly, particularly with alcohol, substance abuse often carries with it much less stigma than being diagnosed with depression.  THIS IS NOT OKAY!

I hope that we, as a society, see the painful and sometimes terrible, results of not dealing with depression and/or not helping people get the tools they need to treat it, learn to better approach it and help those that have it.

For me, I think I have finally found the right medication to treat my current bout of depression, and am excited to see where it takes me once I am increased to the regular dosage. I only hope that I am able to continue to afford it...

6 comments:

  1. I'm so glad that you opened up to share you perspective on depression in our country. You illustrate some key misunderstandings as well as your own personal struggles you have dealt with for what happens both inside of you and what comes from the outside.

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  2. Thanks bro. I have been wanting to blog about it for a while and now seemed like the time. :)

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  3. This is great information, Val! It is really sad that our society is so uneducated about this illness. And the healthcare system...don't get me started. You relayed some very insightful things though. Thanks for sharing your experience.

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  4. You've made your mom very proud. You found the strength and incentive to seek a solution to your problem (just recognizing the problem was a feat), and you've shared your experiences with others which can help them. I love and respect you so much. :)

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  5. Thanks Mom! That means a lot to me! It's usually an uphill battle, but most things in life worth having aren't easy to come by!

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