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Why Chronic Illness Has Me Mourning My 'Former Life'

This time last year, my life looked so different. I was on my way to a new city to start graduate school and was so excited for the new possibilities and opportunities. I was working with a great supervisor and I loved my research on autism spectrum disorders, feeling like I could really make a difference as a child psychologist. My cohort was small and I was making some great new friends that I felt could turn into lifelong ones. My partner had just started substitute teaching and was practically guaranteed a full-time job in the fall which would have meant we could buy a house and get going on our lives. Maybe I could even help kids like me who were anxious and experienced traumas. In sum, those first few months of grad school were amazing!

Then it all came crashing to a halt.

I started waking up with intense stomach cramps and nausea almost daily. I could barely get myself out of bed, let alone on public transit for the nearly hour ride to school. My panic attacks began happening everyday at school. That was, if I could even get myself out of the bathroom to get there. Soon they were happening everywhere I went and extreme agoraphobia began to set in. My stomach started to bloat and I looked four months pregnant. I was scared to move if I felt a moments relief because that set it off all over again. I practically lived in the bathtub as it was my only place of comfort from the pain. I could barely eat and never really enjoyed my food, I just forced it down. I felt sick, in pain and in constant fear over what was happening to me.

I have always had panic disorder and irritable bowel syndrome (IBS) with chronic pain, so I thought at first it was just stress causing it to flare. I told myself this was just temporary as I had been through therapy before and had learned good coping strategies. Also, before I left for grad school, things were going well! I was working a job I loved at an animal shelter and then teaching disadvantaged kids in the summertime. I was active in both a musical theatre company and an adult dance group where I performed regularly and did competitions. I enjoyed my friends, dog and family’s company, so I was very fulfilled and felt accomplished and purposeful. Although, even in my best of times I still wasn’t quite where I wanted to be with my mental health, but at my worst I was coping well, and I was still living.

Now I am existing. I have never felt a cloud as black as this one that began hovering over me. The depression became all encompassing after Christmas. I realized this time was different.

I reluctantly set my plan in motion to move back home. I was lucky to be able to switch my program to an online version so I could continue my studies without having to leave home, but this means no cohort, no travel conferences, no research and scholarship to go along with it. It also meant I was in my apartment all day by myself every day for months, while my partner was at work. That was a dark period for me, I couldn’t leave the apartment and didn’t really want to either. I went from being busy and productive everyday to not having a reason to get out of bed in the morning. The agoraphobia got worse. My only solace was the idea of going home back to my life. I would get better once I got home, I kept telling myself. I can go back to my old job and rejoin dance and see my friends again, it’s probably just being away from my family and support network that is setting this off.

I got home and my illness slapped that back to reality too. Once we were home, I found I was in even more pain everyday than before and subsequently was still having frequent panic attacks. I couldn’t work, I couldn’t dance and I could barely make it out to see my friends. We had to move back in with my family as my partner can’t work and take care of me at the same time. I am entirely reliant on others and I hate it. I am a shell of my former self, and I can’t believe how fast it happened. Six months ago I felt like I had a bright future, now I have no idea what to expect.

I am still trying to get a proper diagnosis from my doctor, but at least now I finally have one who believes my pain is real and well beyond my usual IBS symptoms. I am back in therapy and am seeing specialists to deal with the chronic pain. I know my health must come first, but it is very hard to stay motivated when the life I had and the life I saw for myself no longer seem realistic for me. All I have is my doctor’s appointments to look forward to. I keep questioning – was this just my body’s way of telling me, “Slow down, this is too much?” I no longer know if grad school makes sense to finish as I know feeling like this I can’t possibly do the job. Yet, my online classes are my only sense of purpose these days. What do I want anymore? Just to get better. I try to have hope that the ebb and flow of chronic illness and anxiety will allow me to work and regain some of those dreams.

A photo of the writer of this article, with a caption that reads, "What's my 'normal?'"

It is not just the loses I have already had, but even more so the loss of the future I once envisioned for myself that I am feeling. Right now, I am trying to reconcile what I have lost. It is hard not to get caught in the trap of wishing your life was like it was before. Missed opportunities and failed potential plague my thoughts and dreams these days.

The guilt is also ever present. Guilt over moving my partner across the country, only to move him back into a less stable working environment. The guilt of bailing on everyone and everything in my life. The guilt of the look on my loved one’s faces when they see me struggling daily and they don’t know how to help. I know how much it hurts and impacts them too. Especially the guilt and shame of feeling like this is somehow all my fault and it really is “all in my head.”

I know this guilt is misplaced – it’s the anxiety talking, but it doesn’t change the feeling all the same. It is also hard to get out of this cycle as I think I am in a state of mourning my old life. I think anyone who has struggled with major losses because of their illness should allow themselves that opportunity to grieve. I lost a great deal of myself and that is something I need time to let heal. Often, though, we are so hard on ourselves. I feel pressure to just accept my fate and get over it but I know I need to mourn the “what could have been” in order to move forward with my life and find the “what is.”

Before I left, my former advisor told me something that stuck with me. He said that he too had to take time away from his master’s to get healthy. He said he was now with his PhD, sitting on the other side of the table, so “never give up on yourself.” I don’t plan to, I just need to find what my “other side of the table” looks like now. I try to find joy in the little successes and hobbies I can do, like painting, singing and loving my family. I have begun to try and create a new vision of the future for myself as I mourn my former life. Whatever it ends up looking like I just want to live again. I shall fight until I do.

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