YSI Excerpt: Disability and Mental Health

When struggling with pain, constant fatigue, nausea, malnutrition, loneliness, and a variety of other symptoms, it is not hard to believe that it is common for people dealing with chronic illness and disability to be vulnerable to depression. Whether this is because at times everything becomes overwhelming, due to circumstances influenced or worsened by your condition, or because of deficiency in necessary vitamins and chemicals, it doesn’t ultimately matter. The result is the same: depression.

With all the concern about managing your apparently more serious chronic symptoms, it can be tempting to simply ignore the mental health concerns. It makes sense that you are depressed. Who wouldn’t be if they lived like you? You already have all these other drugs, do you really mean anti-depressants. It’s not like you are going to hurt yourself, you don’t have the energy. And even if you did, would anyone care? You would stop being a burden. No one would have to worry about you anymore. It would stop the pain…

Just like that the depression becomes severe and cause for concern. At the worst moments during a flare, you might be stuck indoors for long periods of time alone. You might be in a hospital bed, your only human interaction the occasional visitor and the nurses, not to mention the person who comes to take your blood every morning. Regardless of whether you see a lot of people or not, you are stuck in one place for a long time. Imagine having to spend your entire day in a small, somewhat uncomfortable bed.  The only time you get up is to go to the bathroom, and to do that you have to push an IV pole that is attached to your arm.

Even if you aren’t hospitalized, the exhaustion can create the same results at home. After a while it starts to drain you even further. Your life starts to stretch out before you, and endless miasma of pain and boredom. You don’t even have the energy to watch TV. You just want to lie in bed, and wish you could get up the energy to have a shower.

What can further complicate the situation is that symptoms of many chronic conditions and depression overlap: fatigue, difficulty falling asleep, lack of energy, pain, and so forth. It can be difficult to tell when you are dealing with one thing or another. Are you unable to get motivated because your Crohn’s kept you up all night, or because your depression is making it hard to care about anything? Is the exhaustion mental or physical? Is my joint pain a physical response to inflammation or to psychological pain? Moreover, sometimes physical pain can cause the psychological pain. It all intertwines until it is almost impossible to tell.

Despite the frequent connection between disabilities, illnesses, and anxiety/depressive disorders, the medical community still has a hard time understanding the correlation. Frequently depression, anxiety, or any psychological diagnosis is treated very negatively. Even if you have a documented disorder that you are getting treated for, a diagnosis of any psychological condition could mean a decrease in the quality of care. Suddenly, every trip to the doctor or ER becomes suspect. Some doctors will wonder if you are faking your symptoms in order to score drugs, while others will assume you are over reacting or confusing mental symptoms with physical ones. It creates a situation where there is an incentive for people with chronic conditions not to seek help for their related psychological conditions.

I have seen this manifest personally. The usual procedure when I come into the hospital is to be given an anti-nausea agent and pain meds. Regardless of whether they think I need to be admitted or not, the usual assumption is that if the pain is bad enough for me to feel the need to come in, then controlling the pain is a concern. On one such occasion, I noticed a slight change in how I was treated. Usually there is an effort to reduce my pain symptoms as quickly as possible. This time around, it seemed that there was a hesitancy to do anything about it. I was offered some anti-nausea medication, but not once was there even a mention of anything to do about the pain.

When the doctor came in to see me, the first questions were not about why I was there, but clarifications about my last visit to the hospital being labeled “psychiatric”. I was confused, having never come to the hospital for anything mental health related.  I wracked my brain for every time I had been to the hospital in the last few months: visit with my gastroenterologist, visit with my rheumatologist, weight management clinic…. Bingo. It seems that the clinic that my GI had sent me to to see about getting help in losing weight with the difficulty of Crohn’s and arthritis, registered as a psychiatric visit on my hospital file.  In combination with my medication for anxiety and ADHD, they has assumed that I had come in to be treated for something else. The pallor of having sought help for a mental health problem changed how they viewed my physical health. I never was offered anything for pain, and I was sent home without any satisfactory aid for what was wrong with me. For the first time I was given the answer that it was “just Crohn’s”. A condition that had such a profound impact on my life was suddenly seen as no big deal because of one tick on my chart that might suggest that I also had depression. That the Crohn’s might be the cause of the depression was never considered. That a person can have two things wrong with them and have them be equally valid and serious was never considered. No clearly, despite the fact that I had a documented condition, depression, anxiety, or any other form of mental health disorder had to mean that the pain was all in my head.

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