Hello my Zebras and Spoonies! Thank you for coming and hanging out with me today. I am glad that you are here.
Today I want to revisit the topic of how I cope with my chronic illness. I made a previous post about this that focused on the philosophy that I use when thinking about my chronic illness that allows me to better manage the challenges I face. You can read that here:
You can also listen to the pod cast here:
But I am revisiting the topic to talk about it from a more practical perspective. I want to talk about some coping skills or tools that you can use to help get you through the tough times. As I got to working on this, I realized that there was a lot of material here, so I’ve broken it into two parts. This is the promised second post about coping skills.
Stress Management
Having stress is unavoidable. And it’s a frequent trigger for chronic illness flares. So, knowing how to manage and cope with stress is essential to achieving a sense of wellness.
The first thing about stress is being mindful of your spoons. Often times, we create additional stress in our lives when we dismiss our spoon count or push ourselves beyond our known limits. Good spoon management is good stress management. This starts with having an awareness of how many spoons you have and how many spoons different activities will cost. Then it comes down to saying no to a lot of things that cost spoons. Even people without chronic illness should be doing this, because Americans have so bought into the hustle culture that most of us struggle to recognize what reasonable expectations and work loads even look like.
Having good boundaries and setting firm limits in our social relationships makes a huge difference in our stress levels. If you have not been maintaining good boundaries or setting limits, initiating this will be very stressful, but in the long run it will reduce your stress. One thing that happens when you set boundaries and limits is that you eliminate the toxic people from your life. That alone will reduce a lot of your stress. Think about your boundaries and limits as your user guide for interactions with you. Once put it into this context it makes sense why they are so helpful at reducing stress (emotional and physical). When others know the best ways to interact with you, they will be less likely to do things that are outside your operating parameters and thus will be less likely to cause stress on your system.
Engage in self care activities. This is going to look different for everyone. Do things that help you feel important, that bolster your self esteem and that are restful. Be sure that you are engaging in play. Too many adults have forgotten how important it is to have fun. Self care is essential because these are the things that are going to wash your spoons. You can’t just throw away the dirty spoons and buy new ones. Sorry, there just isn’t a spoon store out there. So, you got to wash your spoons if you want to have some available to do the things. When you’re evaluating your self care regime, only consider it self care if it gives you back clean spoons. Does a hot shower relax and energize you? Great! You’ve earned a spoon. Or does taking a shower cause you to feel tired and dizzy? Alright. That means you’ve spent a spoon on that activity. Everyone is going to be very different when it comes to getting their spoons washed. But you need to do the work. Figure out what washes your spoons and do those things. You need clean spoons.
Hobbies
The first reason that you should get a hobby is that they are great for stress management. When we engage in activities that we enjoy, we reduce our stress levels. This improves quality of life. I already discussed why reducing stress is so important, so yeah: all that.
It alleviates boredom. Let’s face it there are times that having disability means that are activity choices are limited. If we have chosen activities ahead of time and have all the required things readily available, we can bring more options into our lives. This can be a really huge thing if you are house bound or have ADHD. Boredom can be very hard to deal with. It can be soul draining. Having hobbies is a way to give yourself things to do.
It can offer a sense of productivity during times of illness flares. Many of us cannot work or work less than we used to or would like to. With that often comes the feeling that we are not being productive or doing anything useful with our time. Hobbies can help with this. Especially if you have a hobby that is creative.
Having a hobby gives you something to talk to people about other than your illness. All of us in the chronic illness community are very aware that most people really don’t want to talk about our medical woes and dramas. To be honest, most of it doesn’t make any sense to them. Having a hobby gives you another topic for conversation. When people ask what you’ve been up to you can talk about the book you’ve been reading, the blanket you’re crocheting or those rocks you’ve been collecting. Most people are happy to talk about people’s hobbies. Plus, there are online communities dedicated to these hobbies which can give you a social circle that’s not related to your illness. Because let’s be honest, we don’t want to talk about it all the time either.
Hobbies help you become more patient. In order to develop a new hobby, you have to learn how to do something that is brand new to you. The odds are there will be a learning curve, and you will need to be patient in order to build your skills. Cultivating patience is super valuable because that patience with your new craft will translate to patience with your symptoms and with the stranger who said something insensitive.
It increases your confidence and self-esteem. The odds are that if you really enjoy an activity, you are usually pretty good at it. Any activity that you can excel in is an opportunity for you to build your confidence and develop pride in your accomplishments. And it is all too easy to let chronic illness tear us down and allow us into believing that we have no value or that we can’t do anything well. Having a hobby that we’re good at is concrete evidence that we can be good at something.
I will always argue that anything that increases a skill or knowledge set is valuable. Hobbies do both. Things we learn while doing our hobbies can be translated to other parts of our lives. Not to mention that it is simply good for our brains to use them. Learning and skill building are both ways to protect our brains against dementia. It can help improve the symptoms of brain fog. Because our bodies don’t put effort into things that we are not using. “If you don’t use it, you loose it” is accurate in medicine. So if you want to keep your intellectual capacities, you need to be using them.
It enriches your life and gives you a different perspective on things. No matter what type of hobby you choose, you will definitely be exposed to new ideas. Hobbies help you grow in various ways, including exposing you to new opinions and to new ways to look at life. It usually also includes being exposed to new people. All of this will help you when you are trying to challenge your negative thinking or you’re trying to reframe your thoughts.
Anything can be a hobby as long as it is something that you actively engage with that you do regularly and enjoy doing. There are all kinds of options out there and many of them are very friendly to those of us with chronic illness. Don’t be afraid to try knew things. If you don’t find you enjoy it, that’s alright. The time spent with the task probably taught you something. Just like everything else in medicine, this will be a process or trial and error. I personally recommend having several hobbies that you can cycle through. This will give you more choices and will keep your hobbies from getting stale or boring.
Adaptation
We need to redefine “normal.” This means that we cannot compare ourselves to other people or what they are experiencing but rather we need to take a long and realistic consideration of where we are at right now. This often involves reframing, but I want to talk about this as a separate thing because I think it is so important. If we consider “healthy” or “good” or “normal” being able to run a marathon, then most people won’t be able to achieve that goal. Most people aren’t in the category of people who would be capable or a marathon. Doesn’t mean that failure has occurred because a marathon hasn’t been achieved. In the same way, we need to consider what categories and groups we include ourselves in. When I compare myself to other people with Elhers Danlos Syndrome it feels completely different then when I compare myself to those who don’t have it.
Many times, people express fear in regards to identifying with one’s illness. Acknowledging a thing is a part of who you are doesn’t give it the power to destroy you. I am a mother, a female, a nurse, have Elhers Danlos Syndrome, have ADHD and have autism. None of these things completely define me, but by accepting them as a part of me I can adapt how I engage with the world to better accommodate the characteristics that are a part of each of those categories.
Adaptation can mean a lot of different things. It can be using devices that allow you to use less spoons during the day. It can be accepting your reality as it is. It is the process by which we allow ourselves to be better suited to the environment that we live in. That may require changing the environment or it may require changing ourselves. It requires looking at our chronic illness as a challenge to be conquered or a puzzle to be solved.
Managing Expectations
We need to make sure that we have realistic expectations of ourselves. The nature of mortality is that we will decline in function over time. This is true whether you have chronic illness or not. We cannot maintain the same expectations of ourselves when a change has occurred and continue to function well. Ok, you where able to do this thing before, but can you do it now? And that’s the only part of it that matters: Can you do it now? If the answer is no, then you need to change your expectation. Because there is suffering in the gap between expectation and actual capacity of performance. When we expect that we will still be able to do the things we previously did and then can’t, we experience feelings of disappointment and shame. This is a devaluing of the self. Making sure that your expectations match reality will close this gap and thus eliminate this suffering. It’s about accepting the state of yourself that currently is.
Let’s look at an example. Fatigue is a great example for this. When you were a child, you could run and play without ever seeming to run out of energy. While you had less energy when you are in your twenties, you still had it in abundance. But now your body has changed and you find that you just don’t have the same amount of energy that you used to have. You have fewer spoons. It doesn’t matter what happened to take those spoons. It just matters that you have less of them. You had 40 spoons before and now you only have 20 on most days. If you still plan out your life with the expectation that you can complete 40 spoons worth of tasks every day, then you will fail (in your own mind) every day because you will never have the physical resources needed to be successful. But if you can accept that your spoon allotment is now 20 spoons and you plan your day to never use more then 20 spoons, you will experience more success.
When we are managing our expectations, it doesn’t necessarily mean that we must choose to do less. It might mean that we do things in a different way that requires less spoons. Maybe we allow ourselves to use assistive devices like a wheel chair so that we save spoons for other things that day. Maybe we allow others to take on tasks that we previously had performed and thus use less spoons. Maybe its about learning to pace ourselves in a different way. Anything that uses your spoons in a better, more economical way will help you do what you want to get done while managing your expectations of yourself.
Uncertainty
Life is all about uncertainty. There is no way to know what tomorrow will bring us. Having chronic illness makes you more aware of this uncertainty as your physical status fluctuates from day to day, often leaving you feeling like there is never any way to predict how you will be feeling from one day to the next. Well, that’s how life is for everyone. We make guesses all the time about the future, but they are just guesses. How comfortable you are with uncertainty will directly effect how well you cope with your chronic illness.
Uncertainty occurs when the ground with which we’re familiar shifts, seemingly right beneath our feet, and things are in a state of flux where no one knows what will happen next or how things will play out, and what a “new normal” may look like when the dust settles. The human body is hardwired to respond to uncertainty in that as our brains are structured to assess potential threats and risks. In the face of uncertainty and unpredictability our nervous systems are on high alert, braced for reacting through fight, flight, or freeze. We enter an anxiety state.
Often, the difference between despair and hope reside in a change of perspective. Which is deeply connected with our comfort level with uncertainty. All things come to pass. Everything changes. This is the law of impermanence. Yet we tend to relate to them as though they are or should be permanent. This discrepancy is a source of considerable mental and emotional suffering. As a result, the first and most essential step toward becoming more comfortable with uncertainty and more skillful in dealing with it is to understand and begin to accept that as much as we’d like it to be otherwise, virtually nothing is certain. Just as the only true constant in life is change, the only real certainty is uncertainty.
Becoming more comfortable with uncertainty requires that we sit with it and allow ourselves space to feel what ever we are going to feel in response to that uncertainty. Set a timer for ten minutes. During that time, consider the impermanence and uncertainty in your life. If your thoughts stray, bring them back to this one topic. While thinking about these things, notice how you are feeling and allow those feelings to be present without judgement. Sitting in these emotions will help us become more comfortable with them. Do this meditation at least once a week to help make yourself more comfortable with uncertainty.
Humor
Embrace your humor. Most of the time we take things in life much too seriously. If we ask the question “Will this matter in 5 years?” most of the time the answer will be no. If the issue will not have hold in our lives for more then a moment, why give it much emotional investment? Allow yourself to laugh at your small failures like choosing the wrong word due to brain fog or dropping a cup.
A sense of humor will help you to build resilience to stress as well as improve your overall physical and emotional health. It connects you to other people and keeps your relationships strong. Humor helps us with reframing our thoughts. Laughter can help normalize your situation.
Not feeling like laughing? Start by smiling. Just focus on really trying to make the best possible smile. The physical act of smiling triggers our brains to release some of the chemicals that make us feel happy. And pretend smiling often leads to laughing at how awkward it is to pretend smile. Once you’ve laughed, you’re right where you wanted to be: smiling and laughing.
Get into a social group that cheers you up. Trade jokes or memes with your friends. Make it a goal to have at least one good laugh every day. Find humor in your chronic illness by looking at the sheer ridiculousness of it all or just watch a comedian that strikes the right cord. What you’re laughing about doesn’t matter. Exercising your humor does. Smiling and laughing reduces stress which is always important. The use of humor is also associated with an increase in the function of the immune system, pain reduction, and an improved mood. And there are no side effects. So, go find something funny.
Serenity and Acceptance
God, grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.
I personally recommend that every person with a chronic illness make this a daily mantra. We can easily waste our spoons struggling with aspects of our chronic illnesses that cannot be changed. While we can just as easily find ourselves too overwhelmed with anxiety or fear to make the changes we think could help.
When you find yourself worrying over a problem, the first step is to ask yourself if it is something that you can change. Can I change that I can Elhers Danlos Syndrome? Nope. The next question is to ask if it is something that you can better adapt to. Because this is where we usually hold the power in our lives. The universe often throws a bunch of crap at us that we have no control over and that we can do nothing to change. If we get hung up on those things, we will never see where our power is and we will never find our way forward.
Conclusion
There are endless ways to help us cope with our chronic illness. But remember that you are not required to do this alone. Find support through friends, family, church, online groups or where ever you feel that the people are good to you. Surround yourself with people who treat you well. Don’t be afraid to ask for help. If you don’t feel there is a friend or family member you can go to, then find a professional. There are many services out there for those who are low income and there is an increasing availability of services online.
As always, thank you spending time with me today. I hope that you are well.
If You Or Someone You Know Is In Crisis, Please Seek Help Immediately.
Below are some options for immediate support.
Call 1-800-273-TALK (8255) to reach a 24-hour crisis center available through the National Suicide Prevention Lifeline.
Text MHA to 741741 to connect with a trained Crisis Counselor from Crisis Text Line.
Call 911 or go to the nearest emergency room.
If you need non-emergency support, call the warm line for your state.
Zebra Pig 