I have a feeling that many of us have felt like this month was unending. It almost feels like we should be half way through 2025 and yet as of today we have only finished one month. How is that even possible? Time truly is such a weird, and slippery, concept. With damaging world news—political, natural, violence, and more—it feels like 2025 has gotten off to a bad start.
So what do we do in the face of so much horror, both in the world and personally? I wish I had a perfect answer, a cure-all for this world, but sadly I don’t. But I will tell you what I do. I try to make my world a little better, because if I feel better—emotional as well as physically—I can then go on to help other people. Your cup has to be filled before you can fill someone else’s. So I give myself permission to not go on the news or on social media. I give myself permission to not judge myself based on other people’s lives. I give myself permission to take care of my needs. I try to help the people in my life by lifting their spirits or doing something for them, no matter how small. And I try to find joy.
Is this easy? No! Most days it is hard because I bombard myself with self-criticism, or judge myself for not doing enough, or for not helping other people enough. It can be quite depressing. So on the days that it isn’t quite so depressing, I once again give myself these permissions and hope that I don’t feel too guilty about doing it. My hope is that the more I do it—speak to myself with love and not criticism—the easier it will become as with any skill. This is actually a concept called self-compassion, which I am actively learning and working on. The world is bad enough without me being so hard on myself, and so I am trying. Will all these things make the world a better place? Maybe not. But I do believe that bringing kindness to others—and yes, even to myself—will help in some way. At some point if we are all kind to each other that has to bring about positive change.
Next month Valentine’s Day is celebrated, which is all about love. What if we expanded that love to everyone—ourselves, our families, our partners, our friends, our neighbours—and that we did it not just on the 14th but on every day this coming month? We all have such large capacities to love, so what if we decided to share that? In actions big and small, from smiles to making someone dinner to donating to a worthy cause and everything in between. Maybe this will help the world, and if not the whole world, then at least the world and the people that we interact with.
Let us try to make February the month of love and kindness, let’s see how much positivity we can spread.
As an energy healer, in both Intuitive Healing and Reiki, I know the power of energy. Energy does what we tell it to do, so when we send people positive thoughts, we are actually sending them positive energy! Never underestimate the power of sending people love and kindness.
Sending kindness and joy to you for today and the coming month.
In this month’s interview we get to learn more about Danielle (she/her) and her three diagnoses. We also learn how she uses accommodations to continue to pursue her passions and what the word disabled means to her.
Hello Danielle! It is great to talk with you today. Could you please tell us a little about yourself?
Hi Sarah, thanks for having me! I’m from Seattle, Washington, and use she/her pronouns. I currently attend college in New York. I identify as chronically ill and disabled, but I find that term has so many meanings.
A lot of people assume disabled means ‘unable’, but that is far from the truth. I encounter people who don’t expect me to accomplish much once they learn about my diagnoses, but I am happy to prove otherwise. Disabled means ‘able with accommodations’ to me, it’s as simple as that. Some days I might need to take more breaks, or use mobility aids, but that doesn’t mean I am not capable of completing a task or taking on a challenge!
I currently work as a screenwriter. You can often find me on my laptop typing up my next story, or drawing in order to find my next inspiration. The arts are a huge part of my life, and they make it easier to process the challenges I am faced with due to my chronic illness. I can paint my struggles, write about my tribulations, and share my experiences with the world in hopes of connecting with other people who understand the challenges of being chronically ill. I enjoy my job a lot, as it can be fun to delve into different worlds–but I mostly enjoy using my stories to bring awareness to issues that don’t always have representation both on and off screen. My goal is to continue to bring these stories to life so those who live with these challenges feel more seen and heard–including myself.
Do you have a diagnosis for your symptoms?
I am diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Hypermobile Ehlers Danlos (hEDS). Basically, I have slow-flowing blood, overactive cells, and flimsy organs. Most importantly, my body doesn’t produce enough collagen to support the inner workings of all systems, so I get hurt really easily and my organs work twice as hard to function. This is caused by hEDS, something I was born with.
Many people with hEDS experience GI issues, which I didn’t even realize until it happened to me. I was having trouble swallowing things, and every time I ate something small I’d get nauseous. After a few tests, the doctors discovered my lower esophagus was made up of stomach lining. That meant my stomach was having so much trouble digesting that it was refusing the food, and needed more space to push it back up. I am currently waiting to hear if I have something called gastroparesis, known as a ‘sleeping’ or paralyzed stomach. It occurs when the stomach muscles are impaired and unable to properly react to food entering the area. Because hEDS causes weakened muscle tissue, it directly impacts vital organs like the stomach. It also goes to show that even when a diagnosis is finally found, doesn’t mean the problem is solved. A lot of chronic illnesses come with even more mysteries that branch out from one diagnosis to another.
hEDS triggers a plethora of other symptoms across my entire body when working in tandem with MCAS. I have a lot of trouble in hot climates as my cells expand too fast and cause light-headedness. But in the cold, my joints become stiff and I experience a lot of chronic pain. Not to mention the constant purple hands and feet! My normal body temperature rests around 96 degrees Fahrenheit [35.5 Celsius], which means I often have to layer up to keep myself warm. [Average body temperature is 37 degrees Celsius or 98.6 Fahrenheit].
With POTS, I can rely on those symptoms popping up whenever I do something seemingly simple like getting ready for the day. Standing too quick, raising my arms above my head, and bending down all cause episodes of presyncope–that black vision and jello-leg feeling yielding a warning for a fainting episode. My resting heart rate is around 115 bpm, which tricks my body into thinking it’s in fight or flight mode. [Average bpm is 60-100]. Whenever I stand, go for a walk, or complete housework, my heart rate usually sits at about 160 to 180 bpm. More episodes of presyncope can follow if I’m not careful, which is why it’s important to learn what accommodations my body needs in everyday life.
I received all of these diagnoses at age 18, only a year ago. I’ve had the symptoms of hEDS all my life, but the other two diagnoses I’ve only experienced fully for the past three years or so. At first, it was relieving to hear the cause of such extreme symptoms. I was left nearly passing out from climbing stairs, my heart racing every time I stood–it was all very scary and confusing. But then the diagnosis came with other issues, like the cursed words there’s no cure. Hearing I was stuck with these symptoms forever sounded so grim, but I wasn’t ready to accept that.
The doctors all told me I’d have to stop doing things I loved, like hiking, running, and jobs that required me to be on my feet. With my chronic joint pain, it even threatened my art. But I wasn’t ready to let that happen. It felt unfair to me that something out of my control could jeopardize my passions, but what was even more unfair was letting myself give up just because I felt overwhelmed with the news.
After a few months of learning how my chronic illnesses affected my every-day life, I was able to find a happy-medium for those things I enjoy. There were ways to change–or accommodate–those passions so I didn’t have to stop them entirely. I still hike, I just make sure to bring proper electrolytes and take breaks. I still work jobs that require me to be on my feet, I just communicate with my boss on what I need to be healthy and successful. And I of course still do art, if anything more than ever before. Just because I have the label ‘disabled’, does not make me any less able.
When did you first realize that you had chronic illness and how has your journey been since then?
I first realized that I had some sort of chronic issue when I experienced episodes of lethargy multiple times a week, often paired with fainting. It got to the point where I was in the hospital constantly, left with no answers and even more fear. I am lucky to have an amazing primary care provider that was willing to go on the journey with me to find out what was wrong. He listened to me, unlike a lot of doctors, and validated that what was happening wasn’t okay. Other doctors had told me it was just anxiety, or I just needed to drink more water. Turns out I just needed to get a different doctor.
How has your experiences of the world changed since your symptoms started?
I’ve always been aware of the term ‘disabled’ as someone with a learning disability, but I had never thought about needing mobility aids. It’s eye opening once you realize just how lacking accessibility is all over the world, and how much we have to advocate for ourselves wherever we go. If anything, it’s taught me how to be my own advocate. If I need an accommodation or accessibility change, I am confident in speaking up or requesting that. We live in a world where there are so many different needs, yet only so many are universally thought of.
What has been the most helpful for you as you have gone through this journey?
Harnessing my passions has been so important to me. On days when I feel like I can’t leave the house, I turn to my art to feel better. If I’m not up for creating an extremely detailed painting, I can simply doodle on a piece of paper. There’s so much flexibility in art; it’s always ready to meet me on the level I’m at.
This is the time of year where we try to give ourself a break, to rest and recuperate. This is especially true as many of us run ourselves ragged during the holiday season!
Even if you can manage to not do much, a flare can happen, chronic illness sadly doesn’t go away for the holidays. And sometimes when we give ourselves the permission to slow down, maybe for days at a time during the lull in the holiday season, we can actually get sick. It’s almost like our bodies are saying “Whoa! A break! Finally! Now we can recover properly” and then proceed to show us how much pressure and strain we have put our body through. Even though this happens I still believe this is a great time to slow down and give ourselves, and our bodies, some peace.
This doesn’t mean we don’t have to do anything, but maybe it means doing slow activities or adjusting. Movies, reading, and games are great. If you are in pain, choosing games with short rounds can be helpful so you can choose when to stop. Remember that sitting with a pillow on a chair can be helpful. Takeout or heat up meals or something simply like toast or nachos are great for this time of year. If you have decorations to put away, take it in stages. Also, if you have family to help you can still participate in this de-decorating. I sit on the couch and get handed ornaments to put into their respective boxes. I was quite surprised how efficient that went this year, one person took all the ornaments off and the other two put them in their packages. It was remarkably fast.
Feel free to hibernate at home and say “no” to activities. Many animals hibernate in the winter and so can we! There is something satisfying about this time of year as it is permission to do nothing.
As the New Year starts tomorrow let’s try to carry this restful feeling forward. Try not to be too hard on yourself about resolutions and such. There is nothing wrong about not having a resolution (I don’t!). Remember to be kind and that self-care is not selfish.
I do wish that this new year for you can be one filled with love—both for yourself and others, as well as hope, happiness, fun, and health.
This month in the community interview we talk to Emma (she/her) who lives in Florida about her two conditions and how she uses the terms chronically ill and physical disability/invisible disability. She also speaks about learning to accept a changing body abilities.
Hello Emma! It is great to talk with you today. Could you please tell us a little about yourself?
I live in Florida. Do you have a favourite hobby? Going to theme parks when I’m up to it and reading.
I work as a Kindergarten-2nd grade resource teacher working with students with exceptionalities. I teach their General Education academics as well as make sure that their accommodation needs due to their exceptionalities are met.
Do you have a diagnosis for your symptoms?
I have 2 different conditions:
Neutropenia which is an autoimmune disease in which my blood cannot produce enough of the correct components to fight off infections. For this condition I use the term chronically ill. Neutropenia is a blood disorder. My white blood cells cannot produce a component called neutrophils correctly sometimes. So I’m more prone to catching any sickness and have a harder time fighting off any sickness. Usually neutropenia is a side effect of other diseases such as cancer treatments. I however have a form called cyclic neutropenia where it is in my genetic code and therefore permanent. I have my blood checked every week and have to get a booster shot if my levels are too low to fight off any sickness I might catch.
I also got diagnosed with ankylosing spondylitis 2 years ago. This condition is a form of arthritis that affects all my major joints, specifically the joints around my spine. For this condition I use the terms physical disability and invisible disability.
How long did it take for you to get a diagnosis?Does having a diagnosis help you?
My neutropenia took years and a bone marrow biopsy to diagnose. It does help to have this diagnosis as my specialist for this is one of my favorite doctors. Knowing my diagnosis gets me the right treatment and helps me to know what precautions I need to take in my life to help.
My ankylosing was diagnosed in under a year. It did take some extra tests as to begin with the doctors thought it was a more common form of arthritis such as rheumatoid. This diagnosis does help as I know why my body, specifically my joints, have the issues they do and that it is not due to any lifestyle issue of my own.
When did you first realize that you had chronic illness and how has your journey been since then?
My doctors first realized I had an immune problem in high school but I didn’t get properly diagnosed until after college. I was diagnosed with arthritis in my 30s. Having both diagnoses help explain a lot of issues I’ve had since I was younger and help me to understand what I need to do to take care of myself better.
How has your experiences of the world changed since your symptoms started?
I definitely have had to view my world differently. I’m very independent and was really active in sports and dance when I was younger. Acknowledging the differences in how my body reacts now and that I might not be able to do certain activities I used to, or at least not to the ability level I used to be able to, took a lot for me to accept. I also view others differently. Having an invisible disability myself I always try to acknowledge that every person might be going through something you can’t see and give everyone grace in my interactions with them.
Which of your symptoms do you find the most debilitating and why?
Thankfully I have not had too much of an issue with my neutropenia yet. However my arthritis can cause me to have really difficult days with movement and pain.
Can you describe what a bad day symptom-wise looks like to you?
With my arthritis, a bad day can be having to take extra long to force myself out of bed with aching joints. Extra medication, ice and heat on my joints, and extra precautions throughout the entire day. I really have to focus on my body and know my limitations so that I do not cause a worse flare up where I won’t be able to function that day or the next.
When you have a good symptom day, what do you like to do?
On a good symptom day I love to just do normal activities. I love going to the theme parks with my friends and not having to be the person always telling them I need to rest or need a break. I do still have to be cautious on good days though, since if I overdo it, it could lead to a flare up the next day.
What has been the most helpful for you as you have gone through this journey?
Probably being honest with myself and others about my conditions. Since I look healthy and don’t currently use any mobility devices to help me yet, it can be hard for others to understand that I do have a condition that can make it difficult for me to do things others can at my age. Usually once I explain however the interactions become much more positive and accepting. As someone who has social anxiety issues as well being able to advocate for myself has been a huge process but has really made an impact in my interactions with others.
The holidays are fully upon us! In Canada we have already celebrated Thanksgiving, but in the USA Thanksgiving festivities are in fully swing this weekend. Even if you don’t celebrate Thanksgiving, Black Friday is often the reminder that the holiday season has started. The holidays can be extremely stressful for many people. Now add on top of that having a chronic illness and/or disability and the season can seem impossible. Here are some strategies that can help us all out during the holidays.
Try to reduce how prevalent food is in your celebrations. Many people with food allergies/intolerances/specialized diets struggle with eating at other people’s houses. So if we remove food as the central tenant of the celebration that will reduce a lot of stress. No way to get out of eating? Bring your own food or enlist an ally to talk to the host on your behalf to ensure there is something you can eat. On the flip side, if you are the host and someone needs to bring their own food, don’t make a big deal about it and help them to feel comfortable with their situation.
Make your celebration in the afternoon instead of the evening. Many people with chronic illness/disability struggle with fatigue, so moving the celebrations earlier can have a huge impact on their enjoyment.
Be flexible. Flares happen and it isn’t the fault of the chronically ill/disabled person.
Find a comfortable place to sit as this can increase your length of stay. If people offer you the softest chair and the best pillow, take it! Also, bringing your own pillow to sit/lean on is also a good idea.
Do not feel like you need to hand-make the hostess gift! It is 100% okay to buy something and take it along. This also is true for potlucks, it is perfectly acceptable to buy your item and not make it yourself!
It is acceptable to leave when you are tired. If you find this hard to do, enlist an ally to help you leave when you need to and to make sure that you don’t feel stuck in the situation longer than you can manage.
And remember, you are enough! Be you, you are awesome.
In this interview we talk with Patrick (he/him) who deals with fibromyalgia and who owns a bookstore where it is disability pride month 12 months out of the year. At the bottom of the interview check out the link to read Patrick’s curated disability book lists.
Hello Patrick! It is great to talk with you today. Could you please tell us a little about yourself?
Hey Sarah, thanks for having me. I live on, to the best of my knowledge, Erie, Kaskaskia, and Mississauga land currently known as the city of Cleveland in the state of Ohio.
I run a pop-up bookstore with dreams of a brick and mortar reality. All my new titles are by and about disabled, chronically ill, neurodivergent, D/deaf, blind, deafblind, mad, and otherwise identified folks. This can be difficult for many reasons: authors might not want to publicly identify due to very real concerns around sanism, ableism, and privacy. Publishing catalogues don’t really have functional search categories for disability like they do for queer, race, or religious based identities. There’s also many tricky ethics questions, such as claiming disabled ancestors who didn’t use that term, either because the language surrounding disability was different, disability wasn’t seen as a social category, they might come from a background with different beliefs or stigma around disability, or for a myriad of other reasons.
I spend a lot of time thinking over these complicated knots and hope that reflects in my selection of books. I curate with a focus on disability fiction and disability justice titles. People tap into fiction and nonfiction differently, and fiction and nonfiction tap differently into us, so I want to cast the widest net. The store is an anti-capitalist effort as I personally believe that capitalism and disability are incompatible. I’m hoping to lean into the legacy of other activist and social mission bookstores. I’ve taken a lot of inspiration from Blue Stockings, Red Emma’s, and other bookstores in that vein.
I’ve been at it for about a year now, and it’s been way more successful than my modest goals starting out. Though we’ve rightly celebrated the glimmers of disability representation, there isn’t much space made in mainstream society for disability, whether that’s physically, representationally, or conversationally. It’s especially not reflective of the sheer numbers of disabled folks. People sometimes ask me if I think the population of disabled people is big enough to support an endeavor like this. Setting aside the fact that other disabled people aren’t the only ones interested in our stories, these folks are always shocked that roughly 20% to 30% of our total population is disabled. This idea of disability as a rarity persists in a large part because of a lack of media visibility.
So of course, when people don’t see themselves in media, they don’t just stop. They seek it out. A lot of people turn to books to discover this new identity they’re embracing, seeking recognition that is severely lacking in much of pop-culture, or to understand how to best love a disabled friend or family member. Many folks, disabled and non-disabled, can struggle with the basics. They don’t have the language, and out of fear of giving offense, often avoid the subject. It’s an amusing thing how frequently non-disabled people will ask disabled people how we’re doing, and then when we tell them, they get uncomfortable. Books are a good remedy for that sort of reluctance and/or uncertainty.
Right now it’s just a one person show, but I’m in the process of converting it to a cooperatively owned project. It just makes sense in a lot of ways, both practically and with my own beliefs, but it also is just a natural fit for a disabled bookstore. Disability isn’t monolithic, and having folks with a variety of disabilities and an equal stake and say working together will give us better insights into curation, accessibility, event planning, how to organize the store, everything really.
Do you have a diagnosis for your symptoms?How long did it take for you to get a diagnosis?
Fibromyalgia is mostly a mystery condition. The salient points are that it causes chronic pain and fatigue with a wide variety both in symptoms and severity. It’s not really understood what causes it, though I’ve been told the most current research points at it being a nerve disorder. For me, it began as a dull, post bike ride throb in my knees. This wasn’t a huge surprise. I come from a family with a long history of joint problems, I played a lot of soccer growing up, and I was heading into my thirties. It was earlier than I thought, but I’d heard enough stories from aunts and uncles to expect it. Then the pain spread to my heels. My hips. Shoulders. Elbows. Wrists. Fingers. I couldn’t make a fist because of the pain. My jaw ached whenever I chewed. At its worst I couldn’t hold a book because it was too much on my wrists, had plenty of days where I couldn’t walk, had just one foot swell up so large it couldn’t fit in my shoe, and some nights even the weight of my bed sheet hanging off of my toes caused my heels to ache. There’s also some strange fluctuations. My body doesn’t seem to regulate temperature as well as it used to, and my memory is no longer as sharp as it was (not that it was particularly sharp to begin with).
Today is a different day, though. My care effort is a lot, with multiple doctors’ visits a month if not a week, dietary changes, a monthly procedure, multiple medications, and yoga, swimming, and other low resistance, full body exercise. The admin and care itself drifts between a part time and full time job depending on the week, and of course there’s the constant anxiety of threats to cut medicaid bandied about in the political sphere. Chronic pain and fatigue are still a daily part of my life (after a pop-up I typically need a full day to recover), but it’s got nothing on my pre-treatment days.
I think all diagnoses are a mixed bag. Mine took about three years to receive. It allows me access to care and resources I couldn’t afford otherwise, but that’s less the benefit of a diagnosis than an indictment of our medical system. There are also those (including medically trained professionals!) who will cast doubt on any experience that can’t be verified outside of the person’s own words. This ranges from the casual cruelty of disbelief to the aggressive hostility of being labeled drug or attention seeking. On the flip side, having a name for all of this allowed me to connect with other people and was the beginning of my journey to claiming disabled and disability as an identity.
How has your experiences of the world changed since your symptoms started?
Such an odd thing to think about. In a lot of ways, my whole world has changed. Disability and ableism were only fuzzy words on a distant horizon. Now they’re two dominating forces in my life. I’ve learned so much from this journey. My own sense of self-worth and how we value (or don’t) people in this society. How to slow down. How to have grace for myself, a grace that has extended to others. The struggle of advocating for yourself. How good it can feel to say No. I can say that I have radically changed as a person, and the bodily changes that spurred this on isn’t the biggest change about me.
Is there anything you would like people to know about disability in general?
I think there’s two things I would like to convey to non-disabled people.
First, refusing to seek care is often itself a type of care. Dealing with a dehumanizing medical system is a constant stressor, and our healthcare is bewilderingly difficult to navigate. Even the very hospitals we move through are often poorly labelled labyrinths that take multiple visits to figure out. Medical trauma from callous doctors, nurses, and tertiary staff, as well as the overarching systems and executives who dictate profit before care, is very real. I have had many months where I would rather grapple with my pain and fatigue issues at their current level than deal with these “care” systems for the chance of increased relief. Too often, disabled or sick people who don’t seek specific types of Western medical care are then blamed for their health or are somehow described as “deserving” of whatever struggles they may have. Instead, non-disabled people need to realize that these systems often beat down people who came to them for help, then blame them when they don’t come back.
Second, if someone is talking to you about their disability/illness/condition, you don’t actually have to say anything. Personally, I mostly need someone to listen and try to understand. Not even succeed! Just try. I’m not looking for you to “solve” or “cure” me. People’s discomfort with disability and pain often leads them to push answers on me or try to give me something. I’ve even had people become visibly angry with me when I explained to them why these answers aren’t realistic! The root of this answer pushing is always their own discomfort. It’s understandable. It’s hard to see someone you care about struggling and/or in pain and feel like you can’t do anything. But so often if those people would listen first, they would actually be doing a lot more than lobbing answers that, I promise you, I have almost always thought of well beforehand.
Thank you Patrick!
Check out Patrick’s curated reading lists for Nightlight Books here on Bookshop! The books you buy through Patrick’s lists on Bookshop create profits for Nightlight Books. Also, make sure to follow along on Instagram: nightlightbookscleveland “for the latest in the world of disability lit where we do disability pride twelve months a year.”
I saw an ad for an environmental course that uses practical knowledge from all areas and disciplines to help make us the best stewards to our earth. It was remote so I could do it, but the price was unaffordable. I was lamenting this to my sister when she gave me a look and said “you know I have so many books that you could learn this from”—she used many climate action and different types of activism for her PhD dissertation—and I joked that I would only do it for a certificate. And so she came home, handed me a book, and said “you are now enrolled in my course.” I was gleefully happy, especially when the book she handed me was Robin Wall Kimmerer’s “Braiding Sweetgrass”. I have been wanting to read this for ages, because my sister said it was so good, and I never got around to it. Now I wonder if it was just waiting for me to read it now. Books sometimes have the perfect timing.
As the front of the book says Wall Kimmerer’s book braids together the stories of science, Indigenous wisdom, and the wisdom of plants. I have never read something that so perfectly encompasses the beauty of twined science and nature. I am struck by how personable Wall Kimmerer is even though she is a scientist (I’m not knocking scientists, I was one! But they can be very clinical and sterile). Wall Kimmerer opened my eyes to how we can use science to save the planet while still keeping our joy at the beauty of nature, something that is never taught in science classes. Wall Kimmerer describes a practice where the earth is not a thing to be observed but rather a being, Mother Earth, to be nourished and loved. Something that I believe many of us have lost sight of.
The strand of the braid that I most enjoyed learning about is Indigenous wisdom of nature. It is so personable, and it seems so right. In a world where everything seems beyond our help, this way of being brings us closer and tells us that through community, relationships, and especially reciprocity, we can heal ourselves which in turn will heal Mother Earth. How beautiful is that? We give thanks and joy to Mother Earth because she is the greatest sustainer and gives of herself because she loves us. When someone loves us, we love them in return, and this is what Wall Kimmerer teaches us as a way forward: to be in right relationship with nature, to sustain it, protect it, be stewards of it, and to be in reciprocal relationship with all the beings of nature, because in this community of Mother Earth we are all related.
I can continue to wax on profusely about this amazing book but let’s stop there for a second. Every being on this earth is related. And not just humans. There are countless non-human beings out there, waiting for us to return to relationship with them. In the book Wall Kimmerer talks of Maple, Eagle, Cedar, Spruce and so many more. Each of them contribute their unique gifts to the world, and so we should contribute ours. What is this gift? Gratitude. Gratitude for what Mother Earth continues to give us and as in all relationships showing gratitude through love and acts (such as stewardship). This concept may be way out there for some people, but to me it brought great comfort. I have always felt wonderful in nature, like I could breathe and be myself. I always felt like nature was coming home. Now in my disabled body that can keep me at home, I can be lonely and struggle to feel a sense of belonging. Where does a person with disabilities fit in this world? Especially in a world of productivity. Where does one find community when many abandon you when you don’t get better? And I found my answer. In the plants and the animals. In the numerous non-human beings that are in this world. And so I have started to develop relationships with the ones right outside my door. With Crabapple, Hare, Magpie, Northern Flicker, and even Basil that sits in my kitchen. As with all new relationships it can be awkward at first but I intend to persevere. It is wonderful to have found a sense of community without leaving my home.
Wall Kimmerer talks often of the beauty of nature in her book, but also speaks frankly of the brutal consequences of human consumption and want. It equally sickens me and terrifies me what we have done to Mother Earth and that we may never be able to recover. I was reading the one chapter on Lake Onondaga and I was appalled at what has occurred there. I continued to read and saw Wall Kimmerer’s imaginings of a restored lake as well as that of the Onondaga Nation imaginings and I felt something blooming in my chest. I kept reading trying to ignore this feeling until I couldn’t. I stopped and prodded this feeling and realized it was something that I haven’t felt in a long time. It was hope. I was startled that it was in a chapter about this horrific misuse of human power that I found hope, but I did. And if I can feel hope in the face of climate disaster, then I can find hope for myself and others in the rest of my life. I still carry this hope in my heart, it feels new but I know it has been there before, and it feels right to be able to carry this with me again.
Where should we look for relief for ourselves and the world? To the Elders of course, the Plants. These amazing beings have already shown us so many things and they are the leaders that will point us in the right direction to love and care for Mother Earth.
And so I start with thanking Mother Earth and her love for us; to creating relationships with diverse beings; and I look to the oldest Elders, the Plants, for wisdom and teaching that only they can give. I bring on my journey gratitude and reciprocity.
You need to read this book. It is life changing, eye opening, and hopeful in a world filled with fear. It gave me a sense of belonging, a new appreciation for nature, and community. Do yourself a favour, read this book with open eyes and be prepared to change for the better.
Let us take a lesson from the trees. Change is okay. Resting when we need is okay. So is planning rest. Isn’t this what trees do? Change with the seasons, change their colours, and plan to rest each winter. Thank the trees around you for their beauty and lessons.
In this interview Barbara from the UK speaks to her many chronic illnesses and how they have made her world small, making her thankful for her online community. Barbara is an accomplished artist who represents disability through people’s stories and her paintings.
Hello Barbara! It is wonderful to talk with you today. Could you please tell us a little about yourself?
I live in quite a nice area of Manchester, which has become more and more expensive to live in as house prices have risen. It’s difficult to find a flat I can afford, but managed to find one for now, but unfortunately it has damp and mould, but doubt I could get anywhere in this area as cheap. I have agoraphobia and my flat is well placed for being able to nip out to local shops, as it’s quite central to the village area and is also on the ground floor, which helps with my mobility issues. I live with my partner and my cat, Darren and Mango respectively. Mango is a sweetheart and loves being brushed. Darren less so on the brushing front, but he is funny and supportive when things go badly wrong on the health front.
My favourite hobby is my art which is heading towards being on a business footing for the future and has been heading in an upwards trajectory for the past couple of years. I also do yoga when I am well enough as I think this helps to keep things strong and moving as best as they can be.
Terms I use about myself: chronic illness, disabled, and invisible disabilities. I am trying to learn more about disability politics and am learning about the social model, which is that we have impairments, but it is society that disabled us with its barriers and access issues.
Do you have a diagnosis for your symptoms? If you have a diagnosis, can you tell us what it is and describe what that means for you? Does having a diagnosis help you?
I have a few conditions which I now have diagnosis for, which include Joint Hypermobility Syndrome—now renamed as Hypermobility Spectrum Disorder. Scoliosis, Chronic Migraine, Reactive Hypoglycemia, Anxiety and Depression, Agoraphobia and recovering from Complex Post Traumatic Stress Disorder.
The first severe symptom I got with the joint hypermobility syndrome was the seizing up of my right hip with accompanying pain—it was that seized up, that not even the physio could move it, let alone me. This led on to severe back pains and eventually, 10 years after onset of symptoms, a diagnosis of joint hypermobility syndrome. Having a diagnosis really helped as it made me understand why and what was happening to my body. Made health professionals take more notice of me and not dismiss as just having a bad back and also made me realise that it was an ongoing condition so there is no cure. It was also a shock to realise that I would have issues for the rest of my life and it wasn’t curable.
The scoliosis was diagnosed in my teens and didn’t cause me any issues with pain at the time but I think it now contributes to my chronic back and hip issues as well as the hypermobility syndrome.
I used to get migraines after I’ve been out drinking sometimes, and I presumed I just got worse hangovers than most people, however they increased during perimenopause and became chronic. I still thought they were just severe headaches until a new partner said you shouldn’t be in this much pain and took me to A and E, where they confirmed it was migraine, which worked out best in the long run as I started getting appropriate medications, though difficulty finding one that doesn’t stop working for me at some point. I now have migraines of varying intensity most days. So it probably took me about 20 years or so to get my headaches diagnosed as migraines.
I developed reactive hypoglycemia as a result of having an operation called an oesophagectomy due to having cancer of the oesophogus. It was known to be a side effect from the operation for some people, but I was advised it would resolve and also given atrocious treatment on how to treat it, by my consultant, who suggested me eating chocolate when I got symptoms. I have since joined a reactive hypoglycemia support group which is great for advice on treating hypos and the best diet to try to avoid them. I wear a continuous glucose monitor as I am hypo unaware, which means that I don’t get symptoms until my blood sugar is dangerously low, so the CGM gives me an early warning signal that my blood sugar is dropping. I do my best to eat a high protein low carb diet to avoid as many hypos as possible, but still get them about twice a week. Exercise and hot weather can also bring them on.
I’ve had anxiety and depression since my late teens, it comes and goes and is exacerbated by stress. It wasn’t until I was older that I got medication for it and was able to accept that it is part of who I am.
I also have agoraphobia and this I’ve had from my 30s onwards. It has been through bouts of remission, but I think now having the physical health issues as well as the mental health, it has exacerbated the situation, so it is very rare for me to go out, and is stressful when I do.
Re Complex Post Traumatic Stress Disorder. This was brought on by me having complications after my oesophagecomty – which is a massive operation. I had collapsed lungs, pneumonia and fluid in my chest cavity which made breathing a really hard struggle. In the end they gave me a tracheotomy and attached me to a ventilator. When I got out of hospital, I had changed and felt very low and also lacking in emotion. My inner voice had disappeared. I thought all this was the “new you” you get after having had cancer, until a friend convinced me that I should probably seek counselling. It took me to 8 years after the operation to get counselling, and the counselling really helped. My inner voice returned and I was able to experience emotion again.
How long did it take for you to get a diagnosis?
I first had chronic symptoms from the joint hypermobility syndrome, when my hip seized up, but didn’t realise it was a chronic condition at that point in time and went through 10 years of trying to get made better, and a diagnosis, before finding out it was a chronic condition. In the meantime my chronic migraines developed and I tried numerous preventative meds until finding one that worked for me for 10 years. So it was mainly the back and hip pain that was an issue. I developed the reactive hypoglycemia about a year after the op and that meant that I can’t really eat out anywhere as I’m prone to reacting to it and getting sweaty and shaky and having to have some fruit juice or a mix of fruit and nuts, depending on how low I am. Incorrect treatment can lead to rebound hypos and it’s not always predictable. About 4 years ago my chronic migraine preventative meds stopped working and I’ve pretty much had daily migraines of varying intensity ever since. This is probably the most wearing thing to be dealing with. Followed by the hypos. The agoraphobia means I very rarely leave the house, but sometimes will steel myself to nip out for a pint of milk if migraine is not too severe and it’s not in the time frame of possibly having a hypo.
How has your experiences of the world changed since your symptoms started?
My experience of the world has changed as I now have more severe agoraphobia so very rarely leave the house, most of my friendships and activities are online, so the internet is really helpful with that. I do find that if my migraine is not too severe I can sometimes cope with doing a bit of painting and that can distract me from the pain, but if it’s too severe I just go to bed with an eye patch on and watch tv on very quietly with my good eye—the one on the left. The meds usually make me fall asleep, but this can cause issues as then I sometimes can’t sleep at night—so my body clock gets out of sync, which is really annoying for my partner as he works normal hours. So my world has gone much smaller since my mobility issues, migraine and hypos and is mainly online.
Can you describe what a bad day symptom-wise looks like to you?
A bad day is one with a severe migraine where I have nausea and severe head pain and the meds don’t work. Then I may try to eat some salty food, as I crave that with the migraines and that can lead to me having a hypo. I keep a small carton of fruit juice next to the bed and a plastic container filled with fruit and nuts, and my blood testing kits. Sometimes I get a rebound hypo. Oh forget to mention I also have to sleep sitting up because my stomach is in my chest with no valve, since cancer op. I sometimes get projectile liquid acid reflux so that would probably start off in the early hours, so would be having lack of sleep as well as other symptoms, and pains in my joints from my joint hypermobility syndrome so inability to get comfy in bed. Subluxing of hips so pains in my hip joints.
When you have a good symptom day, what do you like to do?
A good symptoms day, I can be symptom free on some days, but not had one for a long time with no migraine, or hypos, and very little joint pain. On a day like this I would most likely do some painting and also take part in my yoga very enthusiastically, rather than trying to find a yoga to combat that days joint pains.
What has been the most helpful for you as you have gone through this journey?
I have learned how much we can put up with and that the will to live is very strong. It has led me to have an interest in disability and disability politics and also led me down the path of painting portraits of disabled people and people telling their stories to go with their portraits. It has made me realise how much disabled people are dismissed by medical health professionals, especially if they have less well known conditions or aren’t diagnosed. This is why, in my portraits of disabled people, when they tell their own stories it has to be done in their own words. We are not listened to or heard enough and our voices need to be amplified.
Is there anything you would like people to know about your chronic illness or chronic illness in general?
I think as regards many chronic illnesses, the medical profession needs to actually listen and learn from patients. Recently in the UK a young woman with ME has died, she actually had a GP and her GP was on side and kept on sending her to hospital but the hospital continually sent her home. She was too exhausted to eat and chew and was begging for them to set up a feeding system for her to enable her to get nutrients into her body. Her last letter to her GP she said she did not want to die. But she did. Chronically ill people need to be listened to and their symptoms taken seriously by the medical professionals, both GPs and hospitals.
Being an advocate for yourself can be very hard, especially in the medical world. And a hard aspect of this is asking questions. Lots of questions.
Questions like:
“Why this and not that?”
“What about this?”
“Could I have that instead of doing this?”
“Is it possible that I have X disease?”
“Can you order these tests?”
and so many more.
Once we have got the answers we seek, and hopefully find some relief, it is easy to forgot to continue to ask questions, but it is important.
True life example: an acquaintance of mine had a debilitating symptom over the past year and a half which turned out to be a side effect of a medication they were taking! None of their doctors even thought to look at their medications side effects and it took for them to finally see a neurologist to find out. They never even thought that this could be because of a side effect and they were never told that this was a potential side effect before starting the medication.
So good information for all of us, always ask the side effects of your medications and it is probably a good idea to talk to your pharmacist annually to go over your prescriptions and symptoms.
Persistence and asking questions will take you a long way in advocating for yourself.
Final Thoughts for Today
For the symptoms that you have, don’t beat yourself up about what you can and cannot do. You are here in this world and that is important! Being you is exactly what you are supposed to be doing, and that is enough. With a smile, a friendly word, and kindness you spread love to those around you, and that is amazing. You are amazing! Keep it up!
In this interview we learn about Mariah from Maryland and her experiences with many chronic conditions. Read on below to find out more!
Hello Mariah! It is awesome to talk with you today. Could you please tell us a little about yourself?
Hi! I like to describe myself as chronically ill, I live in Maryland, and I love to draw and watch SpongeBob on my free time. My family has been a blessing for me, helping me when I was unable to do anything for myself.
Do you have a diagnosis for your symptoms?
I am diagnosed with Crohn’s disease, hidradenitis suppurativa, and rheumatoid arthritis. Crohn’s disease is an inflammatory bowel disease that causes chronic inflammation of the GI tract. Hidradenitis suppurativa (HS) is a chronic skin condition that causes lumps in places like the armpits or groin. For me specifically, it affects my armpits, my private area and buttocks. Rheumatoid arthritis (RA) is a chronic inflammatory disorder usually affecting small joints in the hands and feet.
Does having a diagnosis help you?
Yes!
How long did it take for you to get a diagnosis?
For my Crohn’s it took a couple months and not long after I got a diagnosis for my RA. For my HS, it took about 3 months.
When did you first realize that you had chronic and how has your journey been since then?
I first realized something was wrong with me when I developed (what I thought at the time) sciatica, but I was so confused because I never strained my body to the point I would have a pinched nerve. It wasn’t until I started having the usual symptoms of Crohn’s, like bloody stools and loss of appetite, when I knew it was serious and time to go to the ER. Because of Crohn’s, I developed an anal fistula and had surgery for it last year in mid-July. But overall, my life now is in a much better place physically. I’m in remission for both my Crohn’s and RA. Unfortunately, I’m still dealing with flares from my HS but they’re not as bad as they were last year.
How has your experiences of the world changed since your symptoms started?
I view the world in a much different light now. I try not to take for granted the little freedom I have now and trying to live a normal and fun life like a young woman in her 20s should!
Which of your symptoms do you find the most debilitating and why?
When my Crohn’s was active, the most debilitating symptoms were the bloody stools and light-headedness. I had one very scary night that has pretty much scarred me. I get scared if I feel any sense of dizziness now. One night I had the urge to use the bathroom (which at that time I knew it was just going to be clumps of blood) and after I finished, I passed out on the bathroom floor. When I woke up, blood was everywhere! And I knew at that position it would be nearly impossible to get back up due to getting lightheaded anytime I stood up. Somehow, I managed to sprint to my bed and pass out again. I woke up to my mom panicking and screaming if I was okay. She helped clean me and the bathroom up that night.
Can you describe what a bad day symptom-wise looks like to you?
Waking up with fatigue and not feeling like getting anything done, not even getting out of bed. Or even getting up to eat.
When you have a good symptom day, what do you like to do?
Draw and play the Sims!
What has been the most helpful for you as you have gone through this journey?
God, family, and friends 🙂 you can’t ask for better help!
Is there anything you would like people to know about your chronic illness or chronic illness in general?
If you were recently diagnosed with a chronic illness, do not feel alone! There are great communities out there that can help remind you that you’re not the only one suffering. I found a great community on Instagram where I’ve made friends 🙂 The community that has helped me feel like I’m not alone in this journey @chronicloveclub on Instagram!
Thank you Mariah! You can find Mariah on her Instagram pages: her main account @loveee.spongebob and her art account @spongieart
![The words “Sava Wellness Community” are written in green cursive script over top of a polaroid picture. The polaroid picture is sitting on top of multiple layers of pink, cream, and white watercolour background. The polaroid picture has the name “Barbara” written in green under it. This is an artist representation of Barbara’s hypermobility that Barbara created herself. The subject is Barbara who has long red hair. She is holding her left arm which has her wrist extended. Barbara is sitting on the floor with her red shoes near her hips and she is wearing black.]](https://savawellness.ca/wp-content/uploads/2024/10/barbara-interview-october-2024.png?w=1024)
Sava Wellness 