Coping With Grief
Last updated: March 2023
Since becoming unwell on my lupus journey, I have struggled with stress. It seems that my body can't seem to handle it, and my nervous system goes into overdrive. This then aggravates my lupus symptoms and usually results in a flare-up. Over the years, I have learned to manage this as best as I can by avoiding stressful situations and triggers. Still, it's impossible to avoid it entirely, as life usually throws unexpected situations our way that we can't control.
Managing grief and lupus
One huge challenge for me was when my beloved dad was diagnosed with terminal Mesothelioma (cancer of the tissues that cover the lungs). He had been experiencing pain in his back for a while, and I just had this nagging feeling that something was terribly wrong. He eventually went to see his doctor, which set off a whole new journey for him, and we subsequently found out that he had 18 months left to live.
As you can imagine, this was a huge shock. He had always been so fit and healthy. I couldn't believe what was happening. Initially, I felt like I was having a nightmare I would wake up from, but of course, this was real.
I also discovered that I was pregnant then, which was tough physically and emotionally.
I went through every emotion possible; it was hard to imagine life without him as he'd always been a pillar of strength to me and all I had been through with lupus.
He got to see his granddaughter born, which was very special because we always thought I could never have children due to my poor health.
Self-care during a loss
I spent as much time with him as possible when he left, and we had some wonderful conversations. It set off new feelings of grief and loss when he finally passed away, which was incredibly difficult. I struggled a lot, and I was just so exhausted. My lupus seemed to become worse, and I developed asthma. Everything just got on top of me, but what strengthened me was my daughter and how I needed to be strong for her.
I spoke to my doctor and a therapist, and they made me realize that I needed to show kindness and compassion to myself. I knew that I needed to make time for myself. I started to practice meditation again, which was a help, and it made me more accepting of what had happened.
I found talking about my dad very cathartic. I would chat with my sister as we shared so many wonderful memories of him. People deal with grief in different ways – not everyone finds it easy to do this, and it can take a long time to open up. Here in England, the hospice offers sessions of bereavement counseling which I also chose to take.
I also learned to be patient with myself – the emotions around grief can be intense and come and go. I found a lovely poem by the author Vicki Harrison:
Grief is like the ocean,
It comes in waves,
Ebbing and flowing,
Sometimes the water is calm and sometimes overwhelming.
All we can do is learn to swim.
Finding my inner strength despite lupus, grief
I took a lot of comfort in this, which helped me trust the healing process. I also connected with other people that had lost loved ones to the same type of cancer through a support group. There was some comfort in that we weren't the only ones going through this.
I talked to my dad; I still do. I always feel like he's watching over my family and me.
I feel that going through this has been extremely painful and overwhelming, especially dealing with lupus on top, but on the same note, I know that my dad would want me to be as happy as I can be. I feel like I have developed an inner strength in dealing with my health challenges and the loss of him, but I have since had the opportunity to chat with others that have gone through similar experiences, which has hopefully helped them in some small way.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?