Hello. My name is Paula. And I endure clinical depression. No, that’s not quite right. I suffer from clinical depression. Well, not exactly. I have a condition called Ehlers-Danlos Syndrome and a condition called Clinical Depression.
EDS is a connective tissue collagen disorder thing that is a genetic thing I had nothing to do with. Depression is a disorder thing that I had nothing to do with either.
While it is true that depression did not give me EDS, it could be said that EDS gave me depression. At the least, it did not help it any. Depression can range from a blue day to the winter blues to suicidal binges. It can range from thoughts of self-unworthiness to self-hatred to extreme sadness. That makes it more than just gloom and doom.
Let me back up some. Many years ago when I was in college, I had my first major episode. I disliked my body so much that I wanted to damage it. I had not been diagnosed (with EDS) yet other than the typical ‘lose-weight’ theory. Been there, did that, didn’t work. So for a period of several months I tried to hurt my body. Not commit suicide, but hurt myself. Like, run head first into brick walls kind of hurt. My body was not my own, it had abandoned me to join some Pain Cult.
I pulled out of that a different person. I finished college soon after, moved up Nawth to be with the rest of the clan, and changed my last name. Paula Johnson no longer existed. Paula Offutt did. A few years later, Mom and I were diagnosed with EDS Type III, now called Hypermobility Type. For a while, all was fine. My body and I had a symbiotic relationship – it needed me to feed it and I needed it to get around.
In 1992, I moved down here (North Carolina) with my partner, Lorna. I had dreams of being a potter and she wanted to see the mountains. By the time I finished the production craft program my body had betrayed me. My body was starting to fall apart. I hurt all the time in many places. Ever had your feet hurt all the way to your knees? My dream of being a potter was no longer a possibility. I was unable to hold a full time job so my feelings of self worth and being of use to my partner plummeted. I stopped taking my meds because if I took them I would need more and that would cost money I couldn’t contribute. I stopped eating because it really was Lorna’s food, not mine, since I hadn’t purchased it. They cannot hook me up to a Pain-O-Meter and say, “Yes, you are in X amount of pain. We validate your statements.” There was no way to prove how much I hurt. Then one day, I found myself sitting on the side of the bed, with a big knife in my hand. I was going to cut myself so that I could feel legitimate pain. So that people could see the wound and say, “That must hurt.” And the pain would be my punishment for being inadequate. For having a body that was not ‘normal’.
I caught myself in time and threw the knife across the room then called my pastor. She put me in touch with a mental clinic where I began counseling. The first thing they did was put me on a medication. I began to see through the fog. I went to group counseling too and got to hear from others who had similar thoughts as me.
Then last year, it began again. It actually started the year before but I didn’t see the signs in time. I sat in one place all day. I stopped taking my meds, even though I now had Medicaid to pay for them. Taking them would ease the punishment, and I didn’t want it to ease. I stopped bathing and caring for myself. Some nights I slept 2 or 3 hours, other nights I slept 12 or more. Finally, several months ago, I started counseling again. I had recently switched physicians and the office had a counseling department. After discussing my problems the first day, it was decided to raise my medication. After fiddling with that for a while, I now take 2 medications and I am doing okay.
My point to sharing all this is to let you know that if you feel something similar to this – it’s not your fault. It’s life. It is brain chemicals. It’s not a form of punishment or that you are a bad person. Nor is it because you are lazy or anything like that. And it is the Pain Cult. Many live in chronic never ending won’t it ever go away pain. Pain that drains what little mental strength we have. Know that you are not alone. Our bodies and our Self are not separate entities, though we wish that they were. This pain can send one to deep depths of depression. Pits that seem too narrow to breathe.
The vast majority of people with disabilities have had to adjust to life around them. Even those born with their disability (and knew it existed) had had to adjust to being different. This adjusting for people with EDS is complicated by the facts that its not always the same problem. It depends on what we have injured, what we have over used, and what kind of weather front is approaching. This variable makes coping and adjusting very difficult.
Not everyone needs a medication. Most of the time you just learn different coping mechanisms. At the same time, those around you are also under mental pressure. Your kids can’t play ball with you and don’t understand why. Your spouse wants to go out to a quiet dinner but your crutches clash with your outfit. The list goes on. They also should seek counseling, if only to go with you once in a while. And counseling need not be with a Psychiatrist nor a MSW. Counseling can be found in support groups, pastors, priests and rabbis. Many cities and towns have a counseling agency that charges on a sliding scale. Medicare and Medicaid also pay for it. If nothing else, email me and I will listen. Just reach out beyond your walls and get help. I did and look at me now! Well, okay, so I am not a Poster Child candidate. But I have survived.
This essay was used by Susan Tower, MSW and my counselor at MAHEC. She used it in the classes she taught for the residents (doctors-in-training) as an example of what is really going behind the scenes for their patients with depression, chronic pain, or both. That dismissing them was just further pushing them down.
