Coping Tips and Tricks for People with EDS, and Other Illnesses: Adventures of a Spoonie Zebra

by Kiera Sauter
Coping Tips and Tricks for People with EDS, and Other Illnesses: Adventures of a Spoonie Zebra

Hello Friends in the Fight! My name is Kiera.

I’m 28 years old and have been chronically ill since the age of 10. Living with Myalgic Encephalomyelitis, Ehlers Danlos Syndrome, and other conditions, I’ve been through many ups and downs with my health. I’ve had periods of semi-remission, and a few utter and absolute crashes. It took 15 years to get a diagnosis, and I received about 10 additional and new diagnoses in the last few years. Although illness has stripped me of many of the choices and experiences that most 10… 15… 21… 28 year olds get to have, I’ve managed to bumble my way through life finding many moments of love and joy.

I am lucky enough to be one of the rare chronically ill people that does not also struggle from a mental health condition. They often go hand in hand, and one can cause the other and vise versa. However, this is not to say that I haven’t had my fair share of mental trauma and hardship. You would have to be superhuman if you managed to go through any type of sustained illness without any mental struggles. After 18 years of these struggles, I’ve learned a few things about coping with chronic illness…

1. Nothing works for everyone and nothing works all the time.

I’ve learned that you have to constantly adapt and change your coping mechanisms. You might go for months with one routine and suddenly those 10 minutes of meditation, ½ cup of applesauce for breakfast, and nightly med routine just isn’t cutting it. Always be prepared and open for change.

2. I’ve always been a super happy and positive person…sometimes unrealistically. 

One of the things that has gotten me through is that I’ve always had a sense that this isn’t what my life is supposed to be, and I’ve had this irrational belief that tomorrow will be better. Every night, I go to bed with the hope that tomorrow I will have improvement or even be spontaneously healed. This is very unrealistic; however, it also makes things more tolerable. It also lights a fire within me to never accept that I cannot have a better quality of life. If we give up, we give in, and we really won’t have a hope or choice in how we approach our lives.

3. Although I am an eternally sunshiny person, I’ve also learned that that isn’t realistic or healthy all the time. 

It is important to allow for, and ride, the waves of your emotions…. to some extent. Sometimes it is important to get angry at the world, or get sad and frustrated at your body. Let yourself wallow in self-pity, acknowledging the battles that you are facing daily. 

People often tell me that I’m a “warrior,” “so strong,” and an “inspiration.” For a while, I didn’t understand these statements. I tried to live up to their expectations. I tried to always find the positive, and I tried to push through everything. However, that’s not what a warrior is. A warrior doesn’t go into battle with a smile on their face and no fear in their heart. They are terrified, they are struggling, and they are angry, sad, and unhappy. But what makes them a warrior is that they face it anyway. You don’t have to be happy with the struggle, you just have to face it and get through it one day at a time. 

4. When people say, “I don’t know how you do it?” I get frustrated because they make it out as if I have a choice.

But I don’t. Giving up is not an option. What is a choice is how you go through each day. Allow yourself to ride the emotions, but always remember that you do have the choice to make the most of what you have. Try to find the moments of joy that make the struggle better. Try to find the beauty in the day, the love in the support around you, and the happiness and comfort of the little things. On my toughest days, I try to find at least a few things that make my day better. Whether this is the cup of tea I’m drinking, the feeding formula bag filled and primed waiting to fill me with nutrients that my family member kindly prepared, or the pair of fluffy socks on my feet given to me by a friend, there is always something worth living for and someone who is happy to see you.

Thank you Kiera for sharing your story with the Mighty Well community! To learn more about Kiera and follow her journey, check her out at @adventuresofaspooniezebra.

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