What I want you to know about chronic illness and mental health
Chronic illness and mental health, do you know about the relationship between the two? For the last few years, I have been dealing with a lot of chronic health issues, a struggle to get answers and treatment. Throughout the process, it has taken a toll on my mental health, and that is why I am sharing this story.
From the Beginning…
Shortly after I started this little blog over four years ago, in 2015, I ended up in the hospital with signs of a stroke. I had a baby less than a year before that. My big kids had to call 911 and get help. I couldn’t communicate with the paramedics. That day, I was pretty sure I was going to die, and it was scary as hell.
Well, I didn’t die, but there were a lot of questions about what happened that day. It wasn’t a stroke. My doctors referred to it as a TBI (Traumatic Brain Injury) relapse. I had a brain injury from years before that from a car accident. They also said that I had a bilateral migraine. I was supposed to follow up with a neurologist.
What followed that day was the start of a long, frustrating process of finding doctors, getting tests, fighting with insurance companies, and finally getting answers. It was a long and painful road. My first neurologist seemed upset that I actually came to the appointment. He didn’t like the fact that I was fat, and brushed me off.
I learned that as a plus-size person and a woman I needed to be aggressive about advocating for myself. However, doing that was exhausting. Jumping through all the hoops was exhausting. Being too tired to be a good parent and partner was exhausting. This was all not only taking a toll on my physically, but mentally as well.
A struggle to get answers
The first two years after that hospital stay were rough. My partner lost his job, and I wasn’t able to work. I was a blogger and party planner who was struggling to focus, now had a stutter and trouble communicating at times.
The TBI relapse seemed to have brought a lot of the issues, ones I struggled right after the accident, back to the forefront. After my accident, when I had the head injury, I struggled a few years with migraines, short- term memory loss, stuttering, and concentration. Building my business started partly as my way of trying to deal with all these issues. I had to quit college and felt like I failed somehow. For me, learning how to run a business made me feel like I had a purpose.
While I knew I needed to get answers, my partner and I struggled trying to get insurance for us. The first job he found didn’t provide insurance. The second wasn’t much better, as it was only part-time. We qualified for Medicaid, but the county messed up somewhere along the way. I had a second incident in my home before I finally had insurance and could get help again. That was 2017.
Prognosis, Diagnosis, and Mental Health Decline
By mid-summer 2017, I was already full swing into having tests done and getting a full line of specialists. I also got a scary prognosis from one of my doctors. She told me she believed I had early onset of dementia brought on by my TBI. Mind you, I was in my 30’s. I had a toddler, a tween, and a teen. That day, I thought the world was crashing around me. She set me up with a new neurologist, and I couldn’t do anything but wait.
The thing about specialists is that you usually don’t get to see them right away. Healthcare in this country isn’t always accessible or affordable. The fight to get from my hospital stay to the start of answers took me two years!!! Also, I had some other event happen in that meantime that I probably should have gone to the hospital but didn’t. My reasoning was that it probably wouldn’t help. I didn’t want to be a financial burden.
By fall, I got to see my neurologist. Towards the end of the year, I started getting some answers. I found out I didn’t have early onset of dementia and the start of some clear answers. However, mentally, I was starting to struggle a lot by that point.
The effects of chronic illness and my mental health
In 2018, I spent a lot of time at the doctor’s office. On top of a diagnosis of myofacial pain, occipital neuralgia, cervical disc disorder, nocturnal hypoxia, and more, I also found out I had asthma and several food allergies. I can no longer have gluten, dairy, or soy. Because certain foods brought flare ups and contributed to some of the scary migraines I had, my doctor and I discussed removing them from my diet. So…on top of the allergies, I no longer eat refined sugar, nitrates, and yeast. Life became very frustrating. My family had to change their eating habits because of me, and I really realized how much of our society revolves around food.
I managed to deal with all of that and even started having more energy by mid-summer. However, the injections my physiologist gave me for the nerve problems wasn’t working well. Then by fall, my heart problems that I have had most of my life came back…because why not.
That was when I gave up. I just gave up.
Giving up and wanting to call it quits
Every story has a climax. Mine was a migraine. It started at the beginning of November and ended with me having a seizure like episode in the beginning of December. This was after I was sent to a different physiologist who fat shamed me and didn’t look at my chart. Then she ignored my symptoms at a follow up. This was during me having to wear a heart monitor for a month, only to have my cardiologist brush everything off. This took place while I was really just wanting to get my life back. I was tired of feeling useless and not able to do anything.
This was also after losing a lot of friends and having people turn their backs on me because they didn’t understand my health issues. It was also after hearing some of them talk about me behind my back. Also, this was definitely after being hurt by some of my own family for doing that as well.
I felt like I was a burden on my family. Not everything was covered by insurance. We had just started digging ourselves out of the financial mess from my partner losing his job and struggling to get something in his field again for a bit. I had to give up my business and a lot of my dreams. Also, I missed a lot of my youngest…you know the fun stuff, all because I was sick.
At some point, I just got tired of being sick. The fight in me to get answers and keep going was gone. I was tired and just wanted to be done.
I tried to kill myself that fall.
Throughout this whole ordeal the past few years, there were points I wanted to die. Sometimes it was because I hurt so much. Other times, it was because I felt like I was a burden. Then there were the times that I just felt so alone. The psychological effects of chronic illness are many. Jumping through all the hoops to get answers is so damn hard. My neurologist even said that he could see my illness contributed to my depression.
That fall, though, I hit rock bottom. I didn’t want to fight for myself anymore, and yet I still did.
After the migraine/ seizure episode, I went back to my original physiologist. I made an appointment to see her after the last appointment I had with the fat-shamey doctor. She tried something different then, and it actually worked.
The next few months that followed involved me doing a lot of reflection and trying to get my life in order. I started blogging more regularly. I learned how to use social media to make money as an influencer, and worked at building a new business.
Then this spring, I took a self-love class with The Heart Advocate, which I totally recommend. While I am not 100 percent better, I am so much better than I was this time last year, both physically and mentally. I plan on going to therapy, but I currently struggle with insurance issues on that. For the time being, though, I just take it one day at a time.
I still have health issues. I still have a long list of food I can no longer eat. However, my body is doing better, so I have more energy. I pace myself, but I have really done a lot. I judged some pin up contests, went on vacation, modeled in a body positive show, modeled for some other projects, rode rides at an amusement park, worked on getting two blogs and a business, and spent time with my family.
What I want you to know about chronic illness and mental health
All I want is to raise awareness and get people talking about how chronic illness effects one’s mental health. Chronic illnesses are often invisible illnesses. When people can’t see your illness, sometimes they think it doesn’t really exist. Other people think you are just making excuses when you have to skip an event or decline an invitation. Sometimes, people don’t understand how hard it is for us, the toll it takes on us mentally…
…And it absolutely takes a toll on us mentally. We have to jump through so many hoops to get doctors, tests, diagnoses, and treatments. Many of us have to jump through more hoops in dealing with insurance companies. My chronic illness forced me to close my party planning business. I missed out on a lot with my kids trying to get to the bottom of everything in order to get better.
We need to talk about mental illness more period. Also, if you have a chronic illness, know that the effects can take a toll on your mental health. Be open about it. The more we talk about it, the more we break down the stigma surrounding it.
If you know someone that this article might help, please share it with them. Let’s break down the stigma together.