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CW: Contains discussion of miscarriage and suicide
I have always been a planner. I knew at a young age that I wanted to be a dietitian and fulfilled this goal through hard work and dedication. I married my first love and I was the first of my friends to marry and the first to have children. I had my dream job and although nothing was ever simple with me, I worked hard to achieve everything that I wanted.
Before I had my first child, I had a miscarriage which sent me into a downward spiral. Six weeks after the birth of my firstborn, Leah, my whole world was shaken. I could barely walk and the mother that I had envisioned I would be was quickly taken away. I struggled to take care of my daughter, never mind myself. I managed to have a second child three years later, followed by two more miscarriages. Then four years later I gave birth to my third child, a second son. Shortly after I gave birth for the third time, the pain in my body was everywhere. I went back to my pain specialist who examined me in a new light and concluded in seconds that I had a genetic pain condition, hypermobile Ehlers-Danlos syndrome (hEDS). Nine months later, the geneticist confirmed this diagnosis.
Although you might think I would have been relieved by this diagnosis, to know that this suffering I was experiencing was not in my head, I now faced a new obstacle. I now had to worry and continue to worry that there is a 50% chance that each of my children can inherit this debilitating illness.
I knew that I wanted three children and was so determined to not let my pain inhibit this desire. I would never complain or question as to why I have to live like this or compare myself to others. I would reassure my voice in my head that I had to stay strong to take care of my children. I put my family’s needs ahead of mine and unknowingly my identity was slipping away. I was not aware of how angry I was becoming or how much I needed my loved ones to empathize, see and hear me, that I almost took my life at the age of 38. I cry every time I realize that I almost made my high school sweetheart a widow and my three innocent children motherless.
After my attempted suicide, the Toronto hospital discharged me in 48 hours with no support. They referred me to a psychology clinic that they did not even know had a six week wait time. I had to take my mental health into my own hands and find support. Seeing a therapist one-hour weekly was helpful; however, not nearly enough. Six months later, I wanted to disappear again, and I began researching both in and out-patient programs locally and out of the country. I came across a private clinic that was only an hour away from my home which would allow me to see my family on the weekends. This clinic, along with my tenacity brought both the old and new Shelby back. I did not realize how badly I was lost. I was only thought of as the girl that was always at home, too unwell to keep up with this fast-paced world.
I was discharged from this hospital one day before our province went into complete lockdown due to Covid-19. I am scared to say but it is true, that six months post-discharge I am thriving as a mother, wife, and exploring both new and old passions. It feels amazing to be interested in and a part of many different avenues. I strongly believe that if I did not admit myself to this private in-patient program, that I would not be alive today. I am so thankful that my husband could support my family financially and emotionally for me to get better. Many do not have this luxury.
My EDS is progressive, and I am doing everything to slow down the progression and enjoy my family, friends, and life as much as I can. I am also slowing down and not jumping ahead to have my entire life planned out. As I now know this is not possible. My mom often said, “Man plans and g-d laughs.” It is true that my life is not exactly as I thought it would be. Ironically, it is more colorful than I ever imagined. Before I became unwell, life was just black or white. I will continue to fight and take one day at a time. Many days my illness will win; however, most days it will not. Keep fighting my fellow EDSers.
ShelbyTags: Coping, Diagnosis Journey, Ehlers-Danlos syndrome, hEDS, hypermobile EDS
Categorized in: Stories