My Most Vulnerable Mental Health Story…
I have gone back and forth in my mind about whether to share this story with my friends on InflammatoryBowelDisease.net as opposed to solely on my website. I often wonder how much is too much or if there is even such thing as sharing too much of yourself on the internet or social media.
Anyway, when I think about what and how much to share, I think about me over various ages that I have struggled with IBD. I needed someone to share the vulnerable, more “behind the scenes” stuff with me. I needed to know I wasn’t alone and that I wasn’t “crazy” or something for having such strong reactions and emotions to life with inflammatory bowel disease. I also think about how good it makes me feel, even now, to know I am not alone with my struggles.
So here goes…
In 2011, I had two major surgeries and I had to give in to life with a permanent ostomy.
That was something I had been fighting for YEARS. I was diagnosed with another autoimmune disease. I was living with chronic intractable migraines that were greatly impeding on well, everything. I wasn’t sleeping because of pain. I was petrified to eat following my second surgery of the year. I was down to 82lbs (I am a little under 5’4). I was in bad shape.
I was hysterical crying in the car in my driveway for a while late one night. I felt so lost and was just done with it all. I didn’t want to die but I didn’t know how to live in this world anymore. The constant pain, never sleeping, feeling so guilt ridden for all I put my family through, not being able to have the life I wanted, etc etc. I didn’t have my cell phone in the car with me at that time. I went back in the house, grabbed it, got back in the car and dialed 911. I said something along the lines of “I can’t fight anymore. I don’t know what to do. I need help”
Nothing magical happened that night other than me going to an ER in an ambulance, getting valium when I got to the ER and a lot of talking. Even though I hated what I did to my parents, I honestly felt good that I did what I did because you know what… my parents would rather have dealt with that scenario than my death. And I don’t say that lightly.
After speaking to a few people it was obvious why I was there and why I would be fed up.
The social workers were in shock when I told them everything I had been through. No one had a clue what to say to me but at least I felt validated and compassion. I had this feeling constantly like I should just keep having surgeries (I have had 15 open) or going through trauma and then get right back to life as though it never happened. I don’t know where the “should” came from but either way, it was like that night my body and mind exploded internally as if to say, “you can’t go on this way and I am doing whatever necessary to get help.”
The following day, my dad stayed home with me and we looked into places that may help me. I ended up voluntarily going into a psychiatric facility for a few days inpatient and then about two months of various outpatient group programs.
While I was there, I met a girl who suffered from Crohn’s Disease. We were both told that someone else suffered from IBD but due to privacy policies, no one could tell us who it was. I remember sitting in a group session and I shared a little bit and afterwards she looked at me and said “I knew it was you!”
Once we were both open with each other about our disease, we were allowed to be in a separate room to talk. (The privacy issue was now void). I remember we also had some funny sitcom in the background that we both enjoyed. I didn’t know anyone with IBD before so it was just nice to talk and know that person knew exactly what I was saying. She also suffered from awful migraines and understood that part too.
A lot happened while I was there and in the months following my call for help.
I was open with not only the girl I met with Crohn’s Disease but also another girl I befriended. I showed her my ostomy within hours of meeting her, which was VERY unlike me.
I share this with you because I want you to know that I understand how hard it is. I share this with you because if you are someone at the end of your rope, I want you to know that there is light at the end of the tunnel. There is hope if you just hang on. And I know “hanging on” is often impossible to do or even think about when you’re in such a bad place mentally or you can’t seem to stay out of the hospital, be out of pain for a short time, or even get some much needed sleep (aka painsomnia).
I also share this story, even though I have gone back and forth for probably a year about it, because it would have made such a difference to me when I was feeling so alone and didn’t have a clue what to do. Just know… you are understood. There is NOTHING wrong with you but a disease you had no control over. Your emotions are completely valid, no matter what they are.
I am also always here if someone needs to talk.
I know it can be hard to admit how close you are to wanting to give up, but please remember, there is help out there.
There is hope. And there are many people who understand. Don’t give up. If I did, I wouldn’t be here to share this with you. I wouldn’t have had some of the amazing experiences I have had since 2011. I wouldn’t have met my best friend and partner. I wouldn’t have met some of the most amazing and strongest people I know who are on this journey with me to some degree. I wouldn’t have had the chance to share some of my experiences with IBD with others who may be struggling.
There is a place for you in this world… even if it seems like you are destined to suffer.
I get it.