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Improving Our Quality of Life

The WHO defines Quality of Life as:

“an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”

For me, quality of life is about my well-being. How do I feel, physically and emotionally? Do I have joy, comfort, and safety? Am I able to participate in my life the way I want to?

Having a high level of physical symptoms daily takes a huge toll on quality of life (and also mental health!). Even before I could take big steps in my thirties like having excision surgery or treating SIBO, I was able to improve my experience with endometriosis and my life through many small changes that seemed inconsequential but added up to something big. Improving my quality of life has meant taking a holistic approach and focusing on everything from my thoughts, self-talk, stress, hobbies, and more. 

Remember:

  • What each of us needs is individual.

  • Many changes are best made through finding habits that work for us. What our specific habits look like is going to look differ from person to person, so it’s helpful to get to know yourself. What helps you? What’s easy to maintain? What do you like? What do you dislike?

  • New habits and change take time. It’s easy to give up on something because it’s too hard or it doesn’t seem to be working, but with practice and repetition, most habits get easier. As for the benefits, it can take a week, month, 3 months, 6 months to really see benefits. Think about how long it can take to learn a language, or an instrument, or a new way of thinking. Or for the body to adjust to a new routine or bedtime. It takes time! Don’t give up too soon.

  • Some of the following suggestions might seem trivial in the face of horrible endometriosis pain. I truly hope each and every one of us can get the pain and symptom relief we need, but our experience of this disease isn’t just the symptoms themselves. It’s also the way our life interacts with our symptoms and disease. Additionally, sometimes we can’t access the treatments that we need, and working on these aspects of our life from a holistic approach can help us feel more in control and cope better with the challenges of this disease. Many people without a disease find suggestions like these help them to live better lives.

This list isn’t complete, but here’s some of the ways that people have improved their quality of life:

Supporting our body with nutrient dense food.

This might be eating more vegetables, learning to cook, or reducing their sugary beverage intake. See my Nutrition page.

Getting enough sleep so we feel rested and recharged.

See my Sleep page.

Reducing stress.

Many people find stress is one of their biggest triggers. Stress never made my pain flare, but it did put me in a terrible mood and added to the dread and depression I felt toward life overall as a person dealing with chronic pain. Stress definitely affects my bowel and bladder function though, and ever since I started having histamine and mast cell problems, too much stress gives me insomnia.

Stress can refer to acute stress or chronic stress. What stressors can we try and eliminate?

Here’s some ways I eliminated some stress from my life. When you read these, you might think they sound ridiculous, but all of these ways that life chips away at you and burns you out add up, especially when you live with chronic pain and fatigue and have limited time and energy.

  • When the underwear I wear went on sale, I bought 30 pairs. Now I only have to do all my laundry once a month at the laundry mat instead of weekly.

  • When I’m in a flare, I can’t do the dishes, so I bought 10 more forks since those always seem to be dirty at my house!

  • I stopped going home for the Christmas holidays because I find everything about it – the travel, the plates of food I can’t eat, the comments from family – completely and utterly exhausting.

What in your life annoys you, drains you, or frustrates you that you can find a solution for? Of course, there’s so much in our life that we may not be able to change (I’d love to not have a bunch of food allergies anymore but that’s likely not happening anytime soon) but there may be more that we can change than we realized.

Managing stressful moments better.

Whether I get stuck in traffic, my partner annoys me, or I get assigned a huge work project with a tight deadline, how can I better manage the stress I feel?

For me, it’s helps to integrate stress reducing activities into my daily routine. I enjoy these activities but doing them daily helps me increase my tolerance for stress and handle those acute stressors better. Habits like taking a walk daily, reading before bed, and singing to a song I love every day help balance out the stress I face.

In moments of acute stress, I like to release it through dancing for a few minutes, letting out a scream, taking a walk, chanting nam myoho renge kyo, or taking deep breaths. These all lower my stress but which one I use depends on the situation.

I’ve also learned to put things into perspective: Is this actually a big deal? Is this something that will be resolved in the next few days? In that case, why should I stress over it? In those cases, I use self-talk to try and pull myself out of stress: “This isn’t a big deal. You don’t have to worry about this. You can handle this. You can be flexible.” It’s not about gaslighting myself or denying my feelings but rather looking at the big picture. We all decide what is stressful to us. I used to be a person with a very low stress tolerance. Everything stressed me out (and I do mean everything!), but learning to recognize between what will likely not be a problem 3 days from now means that it’s likely not as big of a deal as my mind is making it out to be.

No more people pleasing.

This has involved examining the beliefs I had about myself:

  • that as a woman, I should help others and always be “nice”.

  • that I wanted people to like me and my self-worth was based on external validation.

  • that I felt uncomfortable with conflict, especially when I thought people would get mad at me.

  • that fawning is my trauma response.

  • that saying no made me feel guilty and like I was doing something wrong.

Living with chronic pain and symptoms, my energy and time is limited. It also takes hard work every day to take care of myself: whether that’s cooking meals that agree with me, doing medical admin, or literally just trying to survive a flare. Putting in boundaries and learning to stop people pleasing has improved my quality of life immensely. I’ve reclaimed my time and physical and emotional energy for me, and stopped putting everyone else first – especially people that I don’t want to put before me but did because I wanted to be “nice” or not feel the guilt of saying no.

Putting in disability accommodations at work.

This could be adjusting your hours, working from home on a flex schedule, getting a stool or anti-fatigue mats for jobs that require a lot of standing, permission to have more bathroom breaks, and more. If you think you need accommodations, then you need them! But figuring out what you need, getting the courage to ask for them, entering into talks with your employer, realizing your worth and that you are worthy of accommodations (if you need them), letting go of any shame around them, etc – all of this can take time.

Ask JAN is an amazing resource for information about disability accommodations.

Finding our self-worth.

Without me even knowing it, low self-worth negatively impacted every single aspect of my life: my work, my relationships, my thoughts. It increased my anxiety, loneliness, people pleasing. It stopped me from asking for help and accommodations. It caused me to stay in jobs and relationships that I was miserable in because I thought “that’s the best I can get” or “I don’t deserve anything better”. A lot of my low self-worth was based on the idea that “I’m a burden because I’m sick” and “No one will love me because I have an illness” and other toxic, untrue beliefs. To unlearn these, I went into a deep exploration of why I felt this way, which included learning about ableism and the way society treats chronically ill and disabled people.

My life is so much better because now I know my worth. I know that being sick doesn’t make me any less than or undeserving than any other human being. I no longer make decisions based on fear and anxiety. I have boundaries now, don’t put up with toxic relationships, and understand that I too deserve everything that I think my loved ones do.

Changing our self-talk from self-criticism to self-compassion.

Truly the biggest gift I’ve ever given myself. Not only did it improve my self-worth, but it helped me understand that it’s not my fault I’m sick. It’s also extremely hard to navigate being sick – and honestly, life in general – and I’m doing the best I can. There is no guidebook on “how to handle a devastating illness”. We are all learning as we go through the tough, and often heartbreaking, situations we are put in. So much guilt, shame, and anger toward myself has melted away now that I no longer blame and berate myself for every single mistake I’ve made or situation that has turned out badly. Endometriosis is a tough illness. The voice in my head should be my own best advocate and support, not a cruel abuser that kicks me in the face every time I’m down.

Getting more daily movement.

This doesn’t have to be some hardcore cardio exercise! This can be walking more, doing yoga, stretching, dancing. Anything to move our body more.

Finding support.

Living with chronic illness can be isolating, especially in this ableist world that often disparages sick and disabled people. Even our loved ones might not understand how to support us or might make us feel worse about our chronic illness. Finding someone to talk to (in person or online), whether it’s a friend, community leader, or mental health therapist is vital. And one amazing aspect of social media is that it can connect you with the endometriosis or chronic illness community, where there is so much validation, sharing, and learning together.

Hearing someone say “I believe you”, “I’m sorry you are suffering”, or “you’re right – that sounds awful” can literally be lifesaving when we’ve only been met with dismissal and gaslighting. For me, not being believed was destroying me emotionally just as much as the physical pain was.

Getting out more in nature.

Nature is healing for so many of us. Green spaces, the breeze, the warmth of the sunshine – these can help us put our problems into perspective, clear our heads, and find a moment of calm.

Preparing for a flare.

Prior to excision, my period would disable me. For 2 days, I wouldn’t even be able to get out of bed except to walk hunched over to the bathroom at a snail’s pace. So before my period, I’d prepare everything I can think of:

  • Water in the teapot, ready to turn on. Tea bag in the cups.

  • Electric blanket plugged in.

  • Two basins for puking, one on the bed, one in the bathroom. I used to only use one, but I bought another one because when the pain was excruciating I never managed to bring the puke basin with me when I had urgent diarrhea on the toilet. (Resulting in me throwing up on the floor.)

  • Cap loosened on all my medications. A childproof cap was also endo-proof in my high pain state.

  • Soup already in bowls in the fridge, ready to just put in the microwave.

  • Kitty litter cleaned, and a couple days of food and water on the floor for the cat.

  • Food already prepared in the freezer for the days after my period ends, for when I have to go back to work.

  • Check everything a few days before. Did I have enough pads, toilet paper, clean underwear?

Finding a hobby we love.

Hobbies bring joy. Meaning. Comfort. Flow. We often have to give up the activities we love because of this illness, and that is heartbreaking. It can then be hard to find a new activity that we enjoy that we can also actually do, but hopefully with time we can find at least one that can give us a reason to smile and break of the monotony of being sick.

Trying to have acceptance of our life and illness.

Acceptance isn’t about giving up. For me, it’s been about embracing the fact that I have endometriosis and this is my life. What is before me is what I have, like it or not. How can I live with this life that I have and make it a life worth living? Fighting constantly against this unwanted reality isn’t helping my physical or mental health – it’s draining, I’m angry constantly, and I’m incredibly sad. How can I be more flexible and open to collaborating with the life I have? How can I start from where I am? Not where I wish I were nor where I think I should be.

Finding our tools.

I love the quote by Peter Levine: “Without the tools, trauma rules.”

When I was younger, I had 0 tools. I had cruel self-talk, no healthy coping mechanisms, no idea what my trauma response was. I had no self-awareness. I was emotionally crushed by the tiniest stressors (by things that now wouldn’t even stress me out at all).

In my late twenties, I started learning tools: to ground myself, to have more self-compassion, to build my self-confidence, to have less fear, to ruminate less and have less catastrophic thoughts. They are practices, new ways of thinking and reacting to situations that help me have a better physical and emotional outcome during challenging times. Everyone’s tools are different, but having ways to calm yourself, be more aware, be kinder to yourself, and stop spiraling thoughts, etc, can drastically improve one’s quality of life. I learned most of my tools on websites. 

Take it one day at a time.

It’s easy with our health to think that we aren’t doing enough, or to put too much focus on what we think we are doing “wrong” vs what we are doing well. The goal when looking for ways to improve our quality of life isn’t to go down every single rabbit hole, or blame ourselves, or stress ourselves out trying to make 100 changes at once, but rather to have more awareness of how our lifestyle, habits and thoughts impact how we feel.

For example, if we have trouble getting adequate sleep, we can identify that as an area we want to work on, but without blaming or judging ourselves. We can spend the time it takes to address that and figure out what works for us: what feels natural and easy to follow. Once we’ve made that into our new habit/way of living, then (should we choose to) we can look at another aspect of our health. It’s important to have patience and compassion with ourselves while making any changes, because modern life can be hard and we are doing the best we can.