I sort of had an epiphany the other day which I am sure a lot of us Endosisters can relate to. I am either going to say something that might offend some people or help others which are going through something like what I am at this moment.
I have found that lately when I tell my story to people about my journey with Endometriosis I have been getting 1) Tired of repeating it 2) Sick of having to justify why I take meds/doctors/surgeries etc 3) Sick of playing the victim
With that being said, I was sitting outside the other morning and I said to myself that I have to stop explaining Endometriosis and stop being overly dramatic about everything that comes to Endo. It was then that my cardinal came to visit me seconds after the thought. This cardinal goes back to last year when I lost my job. It was there every morning looking at me and chirping away and it was at that time I felt things were going to be okay. So I relate to this bird almost like the universe is telling me that what I was thinking about is something I need to work on in order for me to move forward.
For 25 yrs I went to over 40+ doctors only to be diagnosed with everything under the sun and finally Endo after 14 yrs of pain. I felt that every time I went to the doctors office the doctor was exhausted just looking through my file and medications. They had tried but my pain was so wide spread after years of medical neglect that doctors get extremely confused with me being their patient that they often tell me there is nothing more they can do.
My family were the most unsupportive group of individuals that I came across during this journey and because of that it made living with this disease so much more harder to bare. I am not sure why my mother never took what I said seriously or showed any empathy but it only made things worse mentally for me because I didn't even have the support of my own mother. I don't blame her and that is not why I am writing this part about her, but in order to see and understand why women such as myself that suffer with Chronic pain appear to play the victim you need to have the full background information. Yes she took me to the doctor when I was 13 and I had an ultrasound done to look for cysts but after that it was as if because they didn't find anything it was all in my head, or because she couldn't fix me she ignored the fact I was in pain. That was probably the most hurtful thing that I carry around to this day. It is like a pain that can never be healed. When I was finally diagnosed at 27 I was happy, happy because I knew my pain was real and I didn't have to justify anything to her or anyone any more, or so I thought... It has been 8 yrs since my diagnoses and although she listens I can guarantee that she has never researched anything about the disease and the reason I know this is because I can tell by her responses or comments when it comes to me talking about it. I get really angry inside but I love my mother so I just bottle it up inside. This is just one example of how I feel I need to keep justifying my actions to her and everyone around me including close friends.
I have learned a lot about empathy over the years and I know that women with Endo do not get empathy from most people including their doctors and that is when they are left to feel absolutely alone in this world suffering. Many contemplate suicide because we know the pain will never end and to not have support by your side is a sure way to fall deep into the hole of depression and it is almost impossible to get out.
When I look back at my life what I see is so much darkness and sadness but most of all lost and alone. I had no one to talk to about what I was going through and I have had major depression since I was 15, Fibromyalgia since 17 and Complex PTSD since 35. I feel cheated that I have had to go this journey alone and I can't even express how many times I wanted to kill myself.
So fast forward to now 2015, one year post hysterectomy I have decided to change things around for me. Yes, I will probably still have to go through years and years of doctors and different meds but I am not going to give in to explaining or justifying anything to anyone anymore. I am finally going to live my life for me and if I am not well I am going to take a break, take time off work, take time to lie down, but most of all take time for me. I am 40 years old in 2 years and I have spent most of my life proving I am sick and it got me no where and that is stopping as of today. My life will be filled with people that understand me, with people that don't make me feel like I am some person looking for attention and this is where the next step of my journey is going. You only have one life, and wasting your energy and time on people that lack any sort of empathy is time wasted. I have so much to offer the world from my experiences and my life and for me it will be a renewal of self love and self care. I matter and I matter to many people that share my passions in life and I will no longer play a victim to my illnesses because life is just way to short.