Mental Health Month is ending, but I’m here to tell you, MHM never ends.
I’ve heard that your bravest day is the one you continue to live when you wanted to die. I’ve passed this on to friends but I never knew I’d have such a personal connection to what exactly it meant until this year.
I’m living proof being shattered doesn’t mean life is over. I’m lucky I had others to help pick up the pieces of me & for the mental health team that I’m currently with.
I’ve been in intensive PTSD therapy for quite a few months. So far my experience has been very mixed – just not finding the right match for a therapist I feel comfortable enough to bare my entire soul and broken mind to.
Therapy is both great for you physically and mentally. But it also comes at a price – a very hefty one. The toll that my mind and body were put through mentally just became too much after years of being far too humiliated to actually utter the words “rape” to anyone. It took me 7 years to finally tell my parents about my assaults. Unfortunately, there were multiple.
The thing is, when you experience any kind of sexual assault/abuse, you feel dirty. So dirty that you scrub your body until your skin bleeds. So dirty that somedays you take multiple showers and that’s all you can do. It’s a type of dirty that you feel would expose your uncleanliness to the world.
With uncleanliness, comes shame. And that shame comes like a monster — and in a tsunami of waves. Why couldn’t I protect myself? Chose better people to put my trust in? Then the questions soon turn into guilt. “If my family knew what happened to me, they may never look at me the same again”. Or “What if they think this is my fault?” (I know they didn’t). But most of all, I knew the hardest part would be seeing their faces and knowing how much they had to digest in a very small time.. with a very manic daughter.
I had been ill and in & out of the hospital nearly all winter and things were taking a turn for the worse for me, mentally. Eventually, during the last inpatient stay of last year, I actually became manic from being pumped with so many IV steroids. I went for about 6 days of no sleep before they finally placed me on a bed alarm because I was walking 24 hours of the day. In the middle of a really bad physical state, my mental state was completely deteriorated. This was the first known “trigger” that brought on very traumatic feelings for me. With the steroid-induced mania, my head wasn’t in the right place and this hospitalization was a crumb of hopelessness for me.
I thought “coming clean” would put some weight off my shoulders. I mean – it had been nearly 10 years to the day of my first assault… why was I just developing night terrors, more severe panic attacks and what soon became an official diagnosis of PTSD? I was helpless.
I did the right things. I got out of the hospital. I ended up with a PICC line. I went to therapy, I took the meds, I did the homework. From that point forward, I thought I was putting 100% of myself into self-care.
I knew what I had was an injury; one that resulted from my rape. But at the rate my brain and body were failing miserably to hold each other up, I knew there was nothing left for me to do. So, I gave up.
A couple weeks ago, I did the hardest thing I ever had to do – come to terms with what was happening to my body and my mental state. I was absolutely depleted of all rest and wasn’t finding appropriate coping mechanisms to actually help me get through panic attacks, flashbacks, and episodes of major shock. A few days before I sought treatment, I was in an absolute panic.
I knew what ahead of me was by far harder than anything anyone had ever done to me.
I came to know that I was actually in shock. I guess it can hit at any time, especially if you don’t seek professional help at the times you really should. It didn’t take me long to realize that my sleep cycle – or lack thereof, was causing me to become manic. It was shortly after that I became desperate for help instead of isolating myself like I had been doing for weeks and even months as I recently began to experience intense flashbacks I had never remembered before. I went down a hole very fast and soon all I was capable of was crying in a fetal position. And then the tears stopped. And all I could do was stare at a wall.
I knew the minute I had no interest in seeing my niece and nephews one evening, I needed help. I needed it that night.
Though I was seeking treatment before my hospitalization, it wasn’t the right kind for me and we have now found a more suitable therapy for me that will be intense, hard and it will hopefully break down walls I’ve had built up for years that I just could not emotionally or physically climb out of. It’s going to be fucking hard if I’m honest. In-patient in a psych unit wasn’t the hard part; it’s the transition home and beginning to edge on dangerous thoughts.
The bravest thing I’ve ever done was choosing to seek help. I have zero shame that I was hospitalized or that I sought care. I’m so thankful to my family & best friend who has supported me beyond belief.
I sought help for my deficit the way anyone should with their health – I sought care for it the moment I knew something was broken. This obviously wasn’t a physical type of broken – it was mental and emotional. Nothing could have prepared me to wake up after a night of sleep and experience excruciating PTSD shock, never wanting to wake up.
Life isn’t perfect. The hardest part of my journey will begin as I enter a new type of therapy. I will be challenging, it will be intensive and it will break me down – I’m trying to be as open-minded as possible.
I’m still fighting like hell to be here.
But I’m glad I chose to stay. I will always believe there is a before & an after.
ill always have a before & after.
If you are struggling & in need of resources, please see below.
I’ll never not urge someone to seek health for their mental health. (yeah, a double-negative – arrest me. I’m passionate)
For many of us living with IBD, it seems like our care team is bigger than our immediate families. But there are very important reasons to have these specialists on our teams. Do you know which doctors you should have on your team and why? Below we give a few examples of why it’s important and how they can each individually help us as patients to live a successful and proactive life as a patient.
There are many complications that may arise in patients with IBD. One obvious symptom of something going wrong with inflammation in our bodies is when our eyes look irritated, red and glossy. It can be an obvious sign of inflammation for those that look for it. But did you know that there are some eye manifestations that could cause permanent damage if a professional does not catch it in time? When your regular eye doctor examines you and finds out you have an immune-mediated disease, he/she will likely recommend a good Ophthalmologist that can help oversee your case. In certain cases, like Uveitis or Scleritis, it’s important to see your specialist as soon as possible to prevent further damage, like vision loss or impairment.
Often times, a Urologist may come into the picture when we have trouble emptying our bladders or when certain circumstances pop up, like fistulas. Because of the complexity of these manifestations, a Urologist may order certain types of therapies to help with the course of your disease. Many women experience muscle weakness and may require pelvic floor therapy. Therapies for IBD, especially in women, have come a very long way since even 15-20 years ago. A Urologist may help you strengthen certain muscles that have atrophied or have been affected by surgeries or by the complex nature of the course that is IBD. Again, IBD is different in many patients and you may never need to see a Urologist.
There are many times patients with IBD find themselves at an Endocrinologist. Because of the side effects prednisone has, GI’s may be quick to send a patient who is in remission but still experiences fatigue and unusual symptoms. A quick check of the thyroid provides each doctor a baseline on how you may be reacting to certain medications and also helps rule out any additional medication anomalies dealing with the Endocrine system, in addition to thyroid issues.
High risk OBGYN
This is important especially for patients who want to start a family, in addition to female patients who are affected by IBD in their reproductive parts, like Crohn’s Disease of the Vulva. Seeing someone who knows what they are looking at is extremely important. Ask your GI if they can give you a referral to someone who can help manage your case.
Often times, in immune-mediated diseases, it can be hard to find the core reason why things occur. Is it another underlining condition we aren’t treating? Is it a side effect of the meds we’re currently on that are starting to cause issues? Has your joint pain worsened in ways that affect your mobility and quality of life? Many times, we are referred to Rheumatology to rule other immune-mediated diseases out – like Lupus, Rheumatoid Arthritis and many other diseases that can contribute confusing symptoms on top of an already painful disease. These specialists help diagnose and treat joint pain and other issues related to the bones, muscles and joints.
It’s important to see a medical professional about the stresses that IBD brings on. It’s ALWAYS okay to seek help, especially proactively. As IBD patients, we deal with numerous issues and each IBD is different. The stress that can be brought on of physical symptoms like fistulas and abscesses can be extremely isolating. Talking this through with a seasoned professional who deals with situations like this every day can be very therapeutic. It’s just as important to be proactive with your mental health just as much as your physical health.
Colorectal Surgeon and Gastroenterologist Care Team
Probably the most important on this list would be your GI team. It’s important and crucial for your overall well-being to be in constant, effective communication with your GI care team, letting them know what’s going on with your help and to help manage gut disorders, inflammation, and infections that may affect your GI tract.
There may be more or less than these specialists on your care team. How have other specialists helped you manage your team? Who on your care team has been crucial helping you to fight inflammation, stay in remission or stay out of the hospital?
I grew up in a family that didn’t speak of politics. I mean, I don’t remember politics EVER being brought into a conversation in any family or one on one conversations. Especially not at the dinner table. In fact, I grew up without TV. I appreciate it now and if I ever have kids, will likely have the same rules apply in my household.
But there came a time in my life that politics became more than a tight-lipped topic.
It came my turn to educate myself, speak up, and get involved with things that would affect my future. That moment came soon after I was diagnosed with Crohn’s disease. I got to vote in the presidential election when I moved away to college and it was a big deal to me, though you’d never really know it by having conversations with me. A time and a place? Well, the last few years it has been the time and the place and it was evident to me that I must do my part to feel heard and to do what I feel I need to.. writing to my Representatives, Resistbot and appeals have been a large part of my vocabulary in the last 3 years.
But one question always seems to float to the surface: why must I have to explain to people why they should care about me? About my well-being? Because for me and my “family,” healthcare is my well-being. And truth be told, no one wants to be just a number.
So why do I continue? Because I know people so much more ill than myself who aren’t able to get out physically to make it out to advocacy events due to their disability. My ability decides my direction – I won’t stop until I physically have to.
My voice speaks for those who can’t be heard.
This is the one reason that advocacy keeps me grounded every day I wake up and decide to voice my truth: others depend on me.
So little of this actually has to do with politics, and more about actually caring for your fellow man. Imagine during this time where we see so much crisis, being able to put someone else’s needs over your own…especially over your wants. It has to do with caring for one another, so that we may all have a future, not just bettering one part of the population.
I’ll step off my political pedestal and leave you with this: I wake up 365 days a year knowing that without advocacy, my life wouldn’t amount to much. This is what I choose to do to serve people. Realizing that I have to keep explaining to others why I matter and why my life is important is one of the most heart-breaking things a patient with chronic medical issues can go through. Feeling meaningless, invisible and worthless in a crowd of millions of people. Please don’t make me explain why my life is valuable.
Want to become more involved in your legislature but not sure where to begin?
Text RESIST to 50409 and ResistBot help you contact your officials – from there it will prompt you to put in your location and find out who your representatives are and how to get in touch with them. Simply compose a text and it will fax that text to them automatically. Just follow the steps.