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Chronic Illness and the 5 Stages of Grief

They say there are five stages of grief: denial, anger, bargaining, depression and acceptance.¬†Though I’m not terminally ill and grieving the future loss of my life, I definitely have grieved for¬†the loss of my old life. The one where I had boundless energy and a love of food. Where I was¬†physically fit and loved to go to the gym. The one where I would stay up late hanging out with¬†friends in my dorm room.

First came denial. I would say that’s when my parents and I found out about gastroparesis¬†through our Google searches looking for answers. It matched all my symptoms, but I held on to¬†the hope that, considering it’s fairly uncommon, it wouldn’t be my diagnosis. We planned¬†to ask my GI about doing the gastric emptying scan at my next appointment. To our surprise,¬†she brought up doing the test first. When I got the test done, there was one part of me that¬†hoped it would come back abnormal so I could finally have answers, but I still hoped it would’t¬†show gastroparesis. I knew it was a life-altering illness, and I wasn’t ready for that.

Next came anger. When I was finally diagnosed with gastroparesis, I was angry. I was angry it had come to this. I was angry I had an incurable illness. I was angry my life was changing¬†drastically and there was nothing I could do about it. Some nights, I’d lay awake in bed and ask¬†myself what I did to deserve this. I, of course, knew the answer was that nobody deserves it, but¬†it didn’t help. I needed that time to be angry.

After anger came bargaining. This stage was full of all the “what-ifs.” What if we had found this¬†months ago? Could we have stopped it from progressing? If only we had done this test sooner¬†maybe I wouldn’t be so sick. What if I didn’t go away to university? Would I be healthy? I had to¬†find comfort in the saying “what’s meant to be will be.” I believe if it was meant to happen, there’s¬†nothing I could have done to stop it. I didn’t do anything wrong. It wasn’t my fault.

Later came the stage of depression. I wasn’t diagnosed with depression,¬†but some days, sadness¬†weighed down on me more heavily than others. Sometimes, it felt like I was just moving¬†through life blindly and in a haze. The days felt long and monotonous. I was tired of being in the¬†hospital and tired of being a guinea pig. I wanted my life to change, to get better, to go back,¬†anything really. But there was nothing I could do about that. I needed to live through the rough¬†part for things to improve.

Things didn’t get better over night, but once I realized it was just a bad day, not a bad life, I¬†moved on to the final stage, where I find myself now: acceptance. I’ve accepted that my life has¬†forever changed. I’ve accepted that eating just isn’t something I can do right now. I’ve accepted¬†that I only have limited amount of energy and that, some days, I need some extra help. I’ve¬†accepted that Ehlers-Danlos syndrome and the friends it brought along are now a part of my life and I no¬†longer feel resentful towards it.

Mentally, most of my days are good ones even if my body and stomach don’t agree. My life¬†may be different than what it was before, but it isn’t worse. I still laugh and smile. I may not be¬†able to eat right now, but I now enjoy the conversation and company at meals so much more.¬†

I’m not able to move through life as quickly as I did before, but now I know the importance of¬†slowing down and not letting life pass you by. I may not have a lot of good days physically so¬†I’ve come to appreciate the good days so much more.

I may have lost a lot of things in this battle, but I’ve gained a lot of things too. I have a new and¬†improved outlook on life. I have met some amazing people who either are fighting the same¬†battle or want to offer me support in mine. I have a great team of healthcare providers who¬†want to help me live my life as fully as possible. I am better at putting things in perspective and¬†not sweating the small stuff. I’m OK with all the things I’ve lost because it’s made room for all¬†the things I’ve gained.

When talking to people about my illnesses, I’m often met with the same initial response: pity.¬†But, I’ve accepted that this is my life. I’m on a different road than I ever imagined I’d be on, and¬†that’s OK. I’m OK with it. It’s OK.

You don’t ever need to feel sorry for me because I don’t feel sorry for myself.

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