In this month’s Sava Wellness Community interview series we get to listen to Trish (she/her) from Canada. Trish describes her seventeen year journey with chronic pain and has a great metaphor to describe how her pain just started one day. Trish also talks about how she manages her pain and illness, and how she has been extremely judged for using societal aids because her symptoms are invisible. Trish also explains how exciting it is to make your world big!

Hello Trish! It is great to talk with you today. Could you please tell us a little about yourself?

I live in a townhouse with my two adult daughters on a quiet cul-de-sac. It is older and has lots of windows, which are great for light during our long, cold winters here in Canada. Our small deck is my favourite summer place, I love to drink tea on it and read a book in the mornings. My pain prohibits me from getting up early every day, and slow starts are the best thing for me. Of course that doesn’t happen every day, and I try to make the most of the days when it does. I was a stay at home mom for years and am now a carer for a chronically ill daughter.

I use the terms ‘chronically ill’ and ‘disabled’ when thinking about myself. I find that terms have changed over time, but while these are older they are still applicable for a lot of chronically ill persons. To me ‘disabled’ is the opposite of able-bodied and is a helpful framing for how I navigate the world in my body. I experience chronic pain and find that this term is much less understood, and when/if I use it I am more likely to hear everybody’s pain stories, relevant or not.

Do you have a diagnosis for your symptoms, if you don’t, can you please describe your symptoms? Does not having a diagnosis affect how you live your daily life?

My illness diagnosis is complex in the fact that it doesn’t have an easy label, but it is physiologically based. It started with pain, and it took many different professionals before I found someone who knew what was happening. When I encounter someone who does not believe in chronic pain, I know that it is not all in my head because it is physiological. People want to know what my chronic illness is called, as if they are more comfortable with a label. To me a label doesn’t matter, because it doesn’t change how I feel regardless.

My symptoms have grown the longer I have chronic pain. In addition to the pain throughout my body, I have brain fog, loss of strength in my limbs, side effects from my medication (issues with weight gain, dry mouth, burning mouth syndrome), balance issues and general instability, and mobility issues. My chronic illness started seventeen years ago, and the words ‘chronic illness’ were not even in my or most people’s vocabulary. One day it just started. Someone told me that it is like a tap dripping slowly into a glass of water and finally it overflows, and that is the start of the pain. Throughout my journey I have tried many different unsuccessful treatments to try to ‘fix’ my body, and now I have strategies to help me manage the pain and illness since there is no fix. I live with pain and disability every day.

How has your experiences of the world changed since your symptoms started?

For quite a while after my symptoms started my world was much smaller. I had to give up a lot of things. Over the years though, I have taken back parts of the world and made it fit me. I don’t feel as limited as when it first started. 

I’ve found supports that work for me to navigate daily living as best as I can and reduce my limitations. For example, I have a handicap placard because I am unable to walk far distances. I always use it because my mobility exhaustion comes upon me quickly. I have had lots of judgemental looks for using the handicapped parking spots and it hurts. I can remember two extremely hurtful incidents where I was approached and scolded for using them. I have had to grow a thick skin. It’s sad that we are judged and punished by society (especially for those with invisible disabilities like myself) for something that we did not ask for and already struggle to deal with on a daily basis. I also use a wheelchair when going out for long periods of time or walking long distances. For example, when travelling my daughter (the one who isn’t chronically ill) will push me in the wheelchair in airports or on long walks. We have been able to do incredible trips because of this mobility aid—I would never be able to walk around a Disney park, for example, or through crowded city hubs—and I have chosen to have the mindset that my wheelchair isn’t a limitation, it’s a way of being able to do exciting things that I couldn’t otherwise do.

Which of your symptoms do you find the most debilitating and why? What does a bad and a good symptom day look like for you?

My most debilitating symptom is the pain. It is with me constantly and is very tiring. A bad day symptom-wise is when I can barely get up from the couch. The pain makes my whole body feel physically heavier than it is. On good days I like to go for walks, be outside in nature, or bake something nice for my family.

What has been the most helpful for you as you have gone through this journey?

My daughters have been my biggest support and cheerleaders. They are always there for me, they encourage me to keep going and support me when I need help. They give me unconditional love, no matter what.

Is there anything you would like people to know about your chronic illness or chronic illness in general?

I know that people with chronic illness don’t like to ask for help, myself included. My message to them is to ask for help, it is not a weakness, it is a strength to acknowledge your limitations. Make your world as big as you possibly can!

Thank you Trish!