Managing life alongside a chronic illness

Before my diagnosis life was pretty difficult as all I could tell people was the pain I experienced and many people would dismiss it as just bad periods. For me this made working and education sometimes a difficult time.

Throughout my time in education I would always dread having my period. The worst time for me was throughout high school, where I had no pain management as I was considered too young for painkillers and contraception. I would constantly have to take time out and sometimes it came to a point where the school would tell my mom that I wasn’t allowed anymore time off. It got to a point where I would have to take a pack of heat pads to school to constantly use throughout the day on my back and stomach. Overall at high school I wasn’t given much support as I didn’t have a diagnosis. Maybe if I had a diagnosis high school would of been easier.

However, at university I had a completely different experience. The support I had at university was incredible, when I first had my diagnosis for endometriosis, depression, anxiety and PTSD they referred me to the disability service. The disability service at Manchester Metropolitan University were so helpful. To manage my illnesses they emailed all my lecturers to make them aware and to let them know I wouldn’t always been in lectures. For my mental health, they assigned me to a small room for exams, I was allowed extra time during exams, I was also allowed to take a break during an exam. For presentations they said I would never have to present in front of everyone just my lecturer. I was also allowed to ask for extensions on assignments which was probably the most helpful support I had. Manchester Metropolitan University also offered me their counselling services, but I had to wait months on the waiting list and it wasn’t as helpful as all of the other support they offered.

At work being open about my illness has been positive for me. I used to get so anxious if I had to call in sick because I thought my managers would think I was just exaggerating. However, since my diagnosis and speaking on endometriosis I have had nothing but constant support from my current job, especially from my manager Mark. He reached out to me after my interview on endometriosis was posted on the blog But you don’t look ill. Mark’s words were so kind that I no longer feel anxious when I’m in a bad way and need to call in sick, he told me that if I needed to stay in bed with a hot water bottle or just needed to leave work I just had to say. He also made the rest of the management team aware, which made me feel less anxious again. Also, the rest of the team at Refuge have been so supportive that I feel I can be even more open about endometriosis, if I didn’t have the support I think it would be a much more difficult environment to work in but everyone is so understanding.

All in all it had been pretty difficult at the beginning to manage life with chronic illnesses but along the way it has gotten easier. In being open and honest about my illness and the way I’m feeling it has allowed the support I needed in all aspects of life. Without the support life would still be as difficult as it used to be. I would say for anyone with a chronic illness that they shouldn’t be worried about what others may think or say. Also, make everyone aware about your illnesses that way you can be supported.

With love,

Nakeita xoxo