The Impact Your Chronic Illness Can Have on Your Mental Health

Trigger Warning: Suicidal Thoughts & Vomit

I have occasionally mentioned here that I struggle with my mental health.

I have been diagnosed with Anxiety,Obsessive Compulsive Disorder (OCD), and Sensory Processing Disorder (SPD) as a result of Post-Traumatic Stress Disorder (PTSD)…

And then I got sick.

That’s something they don’t tell you about mental illnesses… as if their widely accepted and easily talked about anyway, right? But never the less that’s something they don’t tell you about mental health… it is strongly impacted by your physical state.

Let’s say that you have never struggle with mental illness before. You don’t bottle up your emotions. You haven’t experienced a life event that you have not been able to cope with on your own. Etc.  But then you become chronically ill and you experience chronic, debilitating pain. It may not affect your mental health right away, but it tends to over time.

Pain leads to what we fondly refer to as painsomnia (lack of sleep due to the inability to get comfortable due pain) which leads to sleep deprivation which leads to irritability, mood swings, depression, anxiety, etc. Pain can also cause you to not be able to participate in activities that you used to be able participate in… This often leads to a grieving process. That grieving process can come in waves for YEARS. Periods of time where you have rationalized and accepted the reality for what it is… and then periods of time where life just feels so fucking unfair! And both are completely and totally acceptable.

It has been shown that in people who experience chronic pain… after a while, their brains actually experience not only chemical changes but physical changes as well. I will link a really interesting article at the end of this post for you to read more but I want to briefly touch on some points to encourage you to actually visit the article…

Chronic pain shrinks the prefrontal cortex. This part of the brain regulates emotions, personality expression and social behavior. Research shows that people with chronic pain have constant, excessive activity in the brain nerves within this area, which causes the neurons to die prematurely. Fear, worry and anxiety tend to become more pronounced in people with chronic pain as the loss of prefrontal cortex causes inability to control these feelings.

Chronic pain leads to a smaller hippocampus. The hippocampus is a part of the brain that helps to regulate emotional responses and is associated with learning and memory processing. People with chronic pain syndrome show a decreased volume in this part of the brain, which can lead to increased anxiety as well as learning and memory problems.

Just a few weeks shy of a year after I became sick it became apparent that my mental health was not something that I could handle on my own anymore. There were aspects of my PTSD that were flaring that I had never even knew existed. I was struggling with sensory processing disorder while at the movies with my family… Something we absolutely love to do together. But sensory processing disorder made it feel like there was literally no escape… But I was still struggling to get doctors to listen to me and I was afraid that if I sought help for my mental help, doctors would listen to me even less than they already were. Mental illness wasn’t causing my illness, I was struggling with mental illness because I was in pain and no one was listening. So I bottled it up and kept it to myself in hopes that the appointment I had on August 29th, 2016 (the year anniversary of me becoming ill) would be the answer to our prayers.

On August 29th, 2016, we drove up to Chicago to Rush Medical University and met with Aimee Szewka, a specialist in headaches and Pseudotumor Cerebri (also known as Idiopathic Intracranial Hypertension). The appointment went well. She was very thorough. We spoke with her for over an hour before she sent me for some tests just a few floors up and then we returned to go over those tests as soon as we had finished. And unfortunately those tests showed that I not only had increased intracranial pressure but I also had what she described as “every kind of migraine” which made my case that much more difficult to treat. Aimee literally told us that she, as the expert in these two areas, wasn’t sure how to help me, but she was willing to give it the old college try.

I was crushed.

I felt hopeless.

We thanked her for her time and I spent the next two months trying to wrap my head around the idea that this debilitating pain was very likely my new normal. My forever. The idea that everything that I had hoped and dreamed of one day accomplishing was very likely never going to happen… And for the first time in my life, I really understood what it meant to be depressed.

As a society we throw the word depressed around a lot. Like it’s the cool thing to be or do. “I’m so depressed today.” “Stop being so depressing!” “That’s so depressing…” So I never really gave it much thought before. It was almost as if depressed was synonymous with sad… but it’s not. Depression is more than that. Depression carries a weight… no, a heaviness that sadness can never touch.

In October of 2018 while I was trying my best to hide my depression from those around me, I became so depressed that I no longer wanted to live… And when I realized this, it really scared me. It scared me because I saw what losing my step mom had done to my dad and I can’t imagine putting him through that kind of pain again… Preventing my family from experiencing that kind of pain again was the kick in the pants I needed to reach out for help.

I reached out to my primary care physician and let him know the extent of the situation and as for him to refer me to a mental health professional and not only did he take days upon days to get back with me, when he did get back with me… he more or less blew me off.

Let me be clear that I am NOT one of those people who had previously cried wolf repeatedly. I was raised that no matter what you are dealing with, you continue to put one foot in front of the other and do the best you can with what you have because “I can’t” never helped anyone accomplish anything.

So he had absolutely no reason to treat me this way, but that didn’t stop me from seeking the help that I needed. I was determined to tell every doctor I saw, specialist or otherwise, what I was experiencing in hopes that someone would take me seriously. It only takes one good doctor to listen right? Thankfully the very first doctor did listen to my pleas for help and referred me to a mental health professional immediately.

Unfortunately this psychiatrist, Dr Jayati Singh, couldn’t get me in for three weeks… Three long weeks.  Once I met with the Dr. Signh, she put me on a very low dose of Cymbalta because she was worried that there may be an interaction with my other medications and referred me to see a therapist, Holen Blackburn, who couldn’t get me in for another three weeks.

I had worked with Holen for roughly two years when she decided that I was getting to sick and that it would be best for me to transfer my care to another therapist or a psychologist. Not mentally ill… physically ill. Chronically ill.

In reality… I started seeing Holen so that she could help me cope with events that happened prior to becoming ill… So that we could work through the trauma that occurred that caused my PTSD and subsequent anxiety, OCD, and sensory processing disorder but unfortunately life happens.

During this time at work I was reorganized to a different department and the department I was reorganized to was VERY toxic. I was the youngest in the department by at least 10 years and because of that, those that I worked with rarely listened to a thing that I said… I was frequently dismissed and treated like a child despite the fact that I was doing the work of two people by myself… and at times I was even filling in for higher ups while they were out on top of my other work and not being allowed over time or being paid for it… instead, I would sneak work home so that I wouldn’t be so overwhelmed and behind the next day at work… It was very stressful. And as most of you chronic illness know, stress frequently leads to a flare in symptoms and chronic stress leads to deterioration of your health.

Two weeks before Holen decided it would be best that we should part ways, I was so nauseated that I ran out of her office and barely made it to the bathroom before I threw up. I had been severely nausea during several sessions… to the point of having to sit or lay with my eyes clothes. I had even decided during multiple sessions with her that my nausea was so bad that I was not going to work.

I think that Holen seeing me so nauseated that all I could do was throw my hand over my mouth and run and apologize later… I think it was all a bit of a wake up call for her. For the first time I wasn’t just talking about how unwell I felt… she got to see it first hand.

While working with Holen we had discussed the many things that my illness has taken from me… from my friends and social life to various aspects of my independence (driving, living alone, some aspects of caring for myself, etc.). It had even taken medical professionals from me. People who would come on to my case convinced that they were the ones who could help me and then after a few months they realized that my case was more complicated than they originally thought. And I am worried that it will cost me my career. I had never considered that it would cost me my therapist and it really really hurt when she said that I was becoming to sick and that she could no longer work with me. It felt like my illness was taking one more thing from me… She definitely could have and probably should have worded that conversation differently.

Regardless, Holen does not specialize in chronic illness which is why she felt it was best for her to release me as a patient and for me to find a new therapist. It’s very important for patients to find a therapist that specializes in their specific diagnosis so that they can receive the very best care possible. So while the things Holen said felt like a betrayal, logically I do know that she was looking out for what is best for my overall health.

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