Chapter 2-5: Lived Experience of Medicine-Based Approaches

Appeal of the Disease Model

Many of us feel that the medical model of mental illness has done us a lot of good.

1. It gave us a clear explanation of what was wrong with us:  We had genetic predispositions to chemical imbalances.

2. It gave us a clear path forward:  Doctors could offer us medicines and medical treatments that would cure or stall the progression of our brain disorders just like they do with other bodily illnesses. 

3. We no longer had to blame ourselves:  We had a legitimate illness that, like other illnesses, was not our fault.

4. We had a tool to fight back against discrimination:  Our problems were not a result of moral failing.  Like most other illnesses, they resulted from factors beyond our control.  

5. We had a tool to access needed services:  We were sick people.  Like other sick people, deserved access to the care and resources that we needed to heal.

As an added bonus, lots of us met caring healthcare professionals who helped to lessen our physical and emotional suffering.  Perhaps they understood us and helped us to understand ourselves.  Perhaps they stuck by us when no one else would.  Perhaps they helped us learn to cope or avoid dangerous pitfalls.  Perhaps called us back from the brink of despair. When we blamed ourselves, perhaps they reassured us that our struggles were not our fault.  We are not bad people, they told us, but rather sick ones, with treatable conditions.

For some of us, this was exactly what we needed or wanted.  It may have been far better than anyone had treated us before.  Or, maybe we were so ashamed it was all that we felt we deserved.  It maybe, pragmatically, it simply worked and helped us get where we wanted to go.

As a result, many of our lives improved, perhaps even more than we had dared to dream possible. With the help of medications, cognitive behavioral therapy – or even more invasive procedures like electroconvulsive therapy (ECT), transcranial magnetic stimulation (TMS) or psychosurgery – some of us found we were able to regain lost capacities or access abilities that we never before knew we had.

Those of us in this group tend to be enthusiastic about conventional medical approaches.  From our point of view, the advances of medicine and modern science have helped us repair the damage done by our 'illness' and and get on to lives we feel good about living.  We are grateful that science has progressed this far.  We embraced the conventional treatment paradigm and urge everyone to follow their provider's instructions to the hilt.

Limits of the Disease Model

On the other hand, many of us simply didn’t respond to conventional treatment in this way. Some of us were forced into it against our will, which made it all the worse.  More often, however, we started out with the same strong faith in medical and scientific approaches as most people have.  But even when we gave it our all, we didn’t get the results we hoped for.

We tried everything known to modern psychiatry and still got worse instead of better over time.  We tried stronger and stronger medications.  We practiced cognitive and behavioral strategies faithfully. We went from doctor to doctor, diagnosis to diagnosis, but nothing seemed to work.  We felt like guinea pigs.  We were in and out of institutions.  We lived in terror that electroshock, brain implants, and lobotomies were the only options left to us.

In the end, many of us tried these treatments of last resort as well.  For some of us, shock, brain implants or even lobotomies ended up being surprising miracle cures.  For others, they were torturous and debilitating. We were never the same again.  We lost capacity instead of regaining it.  Treasured memories and feelings - the day our child was born, the reasons we fell in love with our spouse, our entire college education - were permanently erased.  We lost all hope of a better future, and often years off of our natural lives as well.  Some of us died on the treatment table or in the operating room.

Adding insult to injury, many of us learned – only after the fact – that the chemical imbalance theory was just that – a theory.  There wasn’t a shred of evidence to support it.  It was just a nice analogy that doctors used to explain to us the need to take drugs and procedures that they or others felt would be helpful.  We also learned that, as discussed in Chapter 4, the evidence supporting the high-risk medical approaches we had been subjected to wasn't all that solid either.

Suffice it to say, many of us have come face-to-face with the limits of what medical science has to offer.  Despite our own best efforts and the many professionals who may have sincerely wanted to help, we didn’t progress to our satisfaction.  At best, medicine and science had taken us only a part of the way.  And, far too many of us found ourselves worse off than when we started.