I am not sure this really was round two for me. I had struggled with depression for so long before I hit bottom and needed treatment in my mid-20’s but it was not a constant feeling of depression. I had times where I functioned very well and other times where I could barely get through the day.
My entire junior year of college I had isolated myself. I moved to a new house on campus where I didn’t know anyone and when I returned for my senior year NO ONE knew that I’d even lived there the year before. I was a ghost, showering during off times, entering and leaving through the service door, studying and eating meals by myself in my room when I wasn’t in class. I had been fine my sophmore year and I was fine my senior year so obviously this came in waves. I really have no idea how many times before that I should have sought help and didn’t. So round two is really just a marker for the second time I realized I had no option but to seek treatment.
No one will be shocked to learn that it coincided with Monkey’s diagnosis, I’m sure. I’ve written before about how badly the diagnosis was delivered and how much we struggled in the beginning because we had no reliable information or support. In the first weeks after we learned Monkey had Fragile X, I stopped sleeping. I spent night after night in bed tossing and turning until I couldn’t stand it, then I would get up and go online to search endlessly.
I was feeling guilt, hopelessness, isolation and anger. I wanted answers no one could give me. I wanted help no one would offer me. I wanted to run away but I love Monkey too fiercely to contemplate leaving him behind and, even if I did do such a thing, Fragile X was with me forever now regardless. I thought it would be best for both of us to just cease to exist. I never thought about harming my Monkey, I never would. I just thought it wouldn’t be the worst thing in the world if we could be together and free of all the fear and struggles that lay ahead.
That right there…it’s my crazy* talking. This time I saw it for what it was and I was sitting in my physician’s office the next day. I tried to explain what was happening, I mentioned Fragile X which she admitted she knew nothing about, but ultimately what I did was cry. It was clear I was out of control of my emotions, the lack of sleep, the shock and fear I was feeling, my history of depression all added up to me needing more than she could give me.
She referred me to a therapist in her practice and I set up 3 visits for the first week. That, is a lot of therapy. I needed something to help me even out my emotions though and drug therapy takes time. This was my second round of therapy and it was an unmitigated disaster.
The therapist had not ever heard of Fragile X Syndrome and did not take the time to do any research. I found myself in her office on that first visit explaining what it is and how it’s passed on and I BARELY understood this myself at that time. As I sat there my tears dried up and I started to feel annoyed and then angry. I left, thinking I wouldn’t go back but outside of the office all the emotions that had convinced me to seek help came back. I went back for a 2nd and 3rd visit, repeating all the same information and then she did something I still have trouble believing.
She suggested that, since I was so surprised at the diagnosis and had never suspected anything that serious was wrong with Monkey, maybe he didn’t have Fragile X at all! Maybe they were wrong. I was so stunned, I tried to convince her that it wasn’t a misdiagnosis but she persisted. I left.
The following week I only had 1 session scheduled. When I returned for that visit she started in again about the fact that he might not have it at all. I felt totally disregarded and disrespected. She obviously hadn’t taken any time to check into Fragile X and it seemed she never would. Furthermore, she decided that I wasn’t actually depressed, I was just suffering from insomnia so she prescribed a sleeping pill and nothing further.
I was, again, stunned. She had my medical records. She knew I suffered from depression, she knew that I had been suicidal in the past and that I had used sleeping pills inappropriately (to say the least) in the past and here she offers to hand me a bottle of them and not treat my depression. The medical group that I visit has a staff geneticist (who I later saw) who could have told her, had she asked, that with my history I should be on anti-depressants now and probably forever. But she didn’t ask.
When I left her office that day I took the prescription and did not make another appointment. I filled the prescription on my way home but, after further consideration, I decided it probably wasn’t in my best interests to have it around and I disposed of it. She never once called to follow up. A (reportedly) depressed person walks out of your office with a prescription that she could use to kill herself and never comes back and you do what now? Yes, that’s right, just forget about it…that seems logical, right?
Fortunately for me pieces started falling into place for us after that visit. We found people at the National Fragile X Foundation to listen and advise, we were given contact information of family who could help, we found a geneticist who could explain the situation and what it meant to us, we found a clinic to evaluate Monkey.
I was able to walk away this time without the added support of therapy and I threw myself into finding what we needed to help Monkey. Having this to focus on allowed me to cope.
This isn’t to say that I shouldn’t still be on anti-depressants. I should. Duhdee has, at times, been very worried about me. He’s pushed me (gently) to go back but I was so discouraged by that last attempt and I’m so discouraged on an ongoing basis by the lack of knowledge in the medical community about Fragile X that I just can’t bear to. When I most need therapy, I simply lack the strength of will to get it. I lack the will to educate and advocate for myself the way I do for Monkey. I guess it’s asking for too much to find someone who will go the extra step to educate themselves and figure out how to help me, they all seem to want me to do all the work. I just don’t have the energy for it.
*Please don’t be offended, it’s my (inappropriate) sense of humor. I know this is a very serious disease but self-deprecating humor is my trademark. I can call myself crazy. I’d never call anyone else that though.