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My MS and Me
I’m not sure where or how I should start this essay. As I sit in bed with my laptop resting on the special cushion I use for it on my legs, I’m filled with a multitude of emotions and physical sensations.
Emotionally, I’m nervous about how vulnerable I want to be sharing my experiences as a chronically ill disabled Black woman living with Relapse-remitting Multiple Sclerosis (RRMS,more
Two years into the pandemic, I’m not sure if I can trust nondisabled people anymore
As a multiply disabled person, over these last two years I have come to an uncomfortable conclusion: I can’t trust nondisabled people, as a group.
Like many people in the disability community, I am high-risk according to the Center For Disease Control’s (CDC) list of health conditions that put people at risk for complications or deathmore
As part of New York Metro Hospital’s new promotional program, chronically ill repeat patients are eligible for a free diagnosis after paying for their first nine. Local freelancer and neck pillow expert Jill Ponds is eager to get that next hole punch in her card and capitalize on the freebie.
“After my first appointment I didn’t think I would even come close to ten, because my doctor told me it was just a small UTI. But then it got worse, and it wasn’t a UTI, it was a kidney infection. And then after another visit they said while it technically was a kidney infection, it was being caused by a chemical imbalance.”
The recurring sequence of getting a diagnosis, receiving a treatment and then discovering a new symptom became a frequent pattern for Ponds. Like a game of anatomical whack-a-mole, with each new solution she found herself with an unexplained ache or discomfort.
“Before I knew it, I had seen each specialist in the building and was even added to their iMessage group chat,” she said while eating a handful of her custom “party mix” (made of TUMS, Skittles, Tylenol, Flintstones Multivitamins and a Cough Drop). “I became a local celebrity of sorts, and after diagnosis number seven (IBS) and diagnosis number eight (allergy to IBS medication), I started taking the card seriously and even got it laminated.”
Just days later, Ponds found a weird rash on her fingers and knew she was destined to complete the promotion. She had racked up $40,000 in medical debt along the way, but at least she could sleep knowing her next mysterious illness would be diagnosed on the hospital’s dime.
“I might go redeem my free diagnosis on my birthday, just as a treat to myself,” she told us. “I’m sure something will pop up by then.”more
I can see it non-disabled people’s eyes. The anticipation, the holding of breath, the waiting for a neat conclusion. When I talk about my life, when I describe recent difficulties or periods of pain or illness, they want a story in the traditional sense. They want resolution, a clear narrative arc, a sense of an at least partially happy ending.
And I give it to them. I find the discomfort and messiness hard to articulate and I want to save them from it, even if I can do no such thing for myself. So, I wrap up things up tidily, perhaps with a comforting smile, and say ‘but things are much better’ or ‘everything is fine now.’
But that’s not my life.
Chronic illnesses and pain don’t just end conveniently when we want them to. It doesn’t follow a three act structure with a beginning, middle and end, that is so important in Western storytelling. It comes round again and again, with peaks and troughs, improvements and flare-ups. Pain might be gone for weeks, months or even years but that doesn’t necessarily mean a chapter can be closed.
Of course, all lives are singular and hard to encapsulate neatly but disabled lives and disabled bodies especially belie a narrow, potentially suffocating ideal of what a story looks like.
As a writer, I know how powerful a clear narrative structure is and how difficult it can be to fit a disabled story into a non-disabled mould. In nature writing, which is where I began my writing journey, publishing has often leaned into the idea of the nature ‘cure’ which doesn’t speak to how I, and many other disabled people, experience nature.
Sure, I love being in nature when I can be and find aspects of it both soothing and energising. It can help me feel better in some ways, particularly with my anxiety, but activities like hillwalking – which I love – can also make my physical pain worse. In short, it’s complicated and not a straightforward ‘cure’.
Writers like Josie George and Polly Atkin are writing about nature in fantastic, nuanced ways, showcasing how complex and moving writing which takes a different, winding and complicated shape can be. But there are still far too few disabled voices getting published in mainstream literature and I’ve got to wonder if this is partly due to the industry not knowing what to do with our stories or perceiving them as ‘unsellable’, alongside a lack of accessibility.
This is a problem that goes beyond the writing world, forcing disabled narratives into obscurity and making it harder to tell everyday stories of our lives, with their joys, difficulties and challenges.
The pre-existing shapes that stories are slotted into do us all a disservice. Whether we are disabled or non-disabled, readers or writers, the shapes of stories are important. Seeing similar patterns to our own, seeing similar experiences represented or finding something relatable in a story should be something that disabled people can do.
We should be telling our own stories, in all their intricacy, complications and potential for discomfort. And for non-disabled people to never read or hear a disabled story forces us further into invisibility, giving ground to the idea that we don’t exist and therefore don’t need to be listened to or valued, or have our needs met.
After attending an insightful recent workshop on disabled narratives with Charlotte Heather, founder of The Remote Body which runs writing workshops for disabled and chronically ill people, I was inspired to think further about what shape my story could have.
Instead of an ‘arc’, I was encouraged to think of it as a circle, or a perforated line, or as a meandering river with tributaries breaking off it – to try out different ways of telling that reflect the way my pain goes up and down without a clear endpoint, and repeats itself cyclically.
The possibilities are endless, and creatively rich. They’re not only important in terms of amplifying disabled voices, but they are interesting from a craft perspective and have so much to add.
So next time I talk about my pain or my body, I’ll try not to grin and bear it, and make my story fit into non-disabled patterns.
I’ll try not to make other people comfortable when talking about my own discomfort. I’ll let it be the shape that it is; organic, changeable, hard to figure out. I won’t shut down possible futures by ascribing my own ending.
The post How Pressure to Provide a ‘Resolution’ is Impacting Disabled Stories appeared first on The Unwritten.more
So you have a new chronic illness, Long Covid, or disability and now your world has changed. I’m so sorry you’re facing this situation. You’ve probably not had time to adjust yet and you had no way of knowing that you’d be going through this.
Contributed by Asher Wolf, originally published as Beyond The Bullshit Of ‘Too Bad, So Sad’: On Life With Chronic Illness and Disabilities.
In 2018 I was diagnosed with a chronic illness and disability: Ehlers-Danlos Syndrome. As I pushed for diagnosis and management of my condition, it also became apparent that I was also facing multiple comorbidities: autoimmune progesterone anaphylaxis, ongoing migraines, hernia, Raynaud’s syndrome, bursitis, and a shoulder fracture. Due to lack of movement for many years, I had extreme physical de-conditioning. I had treatment needs I couldn’t recognise at first. I didn’t know how to access referrals and rehabilitation at the start. And while I’m not ‘fixed’, I’m doing a damn lot better than I was in 2018.
So I want to share some of the techniques I learned for living with chronic illness and disabilities. Of course, this is a non-comprehensive list. I hope it’s helpful:
- You’re a person, not just a patient. Your life is more than just your medical condition or disability. Don’t lose sight of that.
- Keep records of everything. List all your conditions, keep copies of medical files, keep copies of scans and pathology reports.
- Write up your personal medical history, medications and family history. Print it out, put multiple copies in your folder. Take your folder with you to each specialist appointment. Hand a copy to each new medical specialist you meet.
- Join patient advocacy groups. Create your own if none exists. Learn from other people what worked for them. Don’t be scared to create a separate unofficial little space of folk just like you that you can relate to. You don’t have to join the mega-group on Facebook if that kind of space doesn’t work for you.
- Research what works for others with your condition. Learn from their experience. Check medical journals and patient groups for management options and therapies that are accessible to you.
- Advocate for the care you need. If you struggle with basic self-care, seek external supports or the funding you need. Start talking to agencies and organisations that may be able to help you.
- Rehabilitation and physical therapy should be affordable, accessible and tailored to your personal needs. One-size-fits-all rehab can be dangerous and cause injuries. Find a physical therapist and occupational therapist who can work with you at the level of movement and recovery that you’re at. If you’re in intense pain after sessions, reconsider if it’s the right form of therapy.
- Find ways to manage pain. You cannot heal or get stuff done when you cannot sleep or function properly. Seek a referral to a pain management specialist or clinic. Research ways that people with your condition(s) manage their pain.
- Plan ahead. Sometimes caring for yourself in chronic illness is difficult. Stock up on meds and scripts. Put meals and soup in your freezer. Write out a daily routine if you need to. Basic care is important. Just because you survived an acute illness doesn’t make you invincible. If you don’t drink enough water, you’ll get dehydrated. If you don’t shower, you risk skin infections. If you aren’t eating healthy meals regularly, you’ll risk nutrient loss and will feel exhausted. If you aren’t regularly rolling over in bed, you risk bedsores. If you’re not moving, you risk de-conditioning. Try to find ways to meet your basic life-sustaining needs.
- Don’t be afraid to ask for help. If you don’t get help, speak up, try again, even if your voice shakes. You shouldn’t be sitting alone in pain every day.
- Find a doctor who can manage complex conditions. Not every doctor you meet will be able to do this. Some simply don’t have the skills, other will be reluctant to take you on as a patient because of the amount of time it takes to manage complex health conditions. You need someone who can write referrals, send off pathology and scan requests, and will treat you in a dignified, respectful and compassionate manner. Don’t be scared to ‘road test’ doctors. Have a short appointment to meet with potential doctors who might be able to support you long-term.
- Lobby for better condition management, treatment and funding. Write letters to your local representative and healthcare agencies requesting outpatient specialist clinics for people with your condition. If they don’t respond, get a petition going. If they still don’t respond, start a media campaign. Remind them that elections are only so many months away and people with disabilities vote.
- Find a counsellor or a psychologist to talk to about your condition. You’ve been through so much and while talking to other patients may be helpful, patient groups aren’t a great place to dump medical trauma — avoid making them toxic spaces, find a professional who can help you process your experience in a safe space.
- Always treat medical staff and healthcare workers politely. It may seem difficult to smile or a crack a joke when you’re in pain but… it will help you to navigate broken systems.
- Doctors and nurses aren’t gods. From time to time, they make mistakes and get things wrong. Don’t expect a ‘Dr House’ to suddenly appear and fix everything. Your condition might improve or worsen or maybe just stay the same, but what matters is working on your day-to-day quality of life. Don’t rest all your hope in doctors ‘curing’ you.
- If health workers behave abusively, end the consult and leave if you can. Make sure you make a formal complaint. Reporting abuse is a safety mechanism: it’s worthwhile reporting it immediately as you won’t necessarily know what they’ll write in your file and how it will effect your future medical care. Reporting also potentially helps other people avoid abuse. Seek alternative care options. Remember: no gods, no masters when it comes to healthcare. Find what you can control within the system. Figure out ways to gain access to better treatment. Make noise on social media about what’s not working. Find journalists you can work with to try to reform the system.
- Nominate advocates. Bring them to medical consultations, ask their opinions, let them offer moral support (and possibly hugs.) Don’t go alone to medical consultations if you can avoid it.
- You don’t have to put up with shit just because you’re unwell. Some people may put themselves forward as a ‘support’ and you’ll quickly discover they’re trying to control you or are bossing you around. Abuse is never ok. Set boundaries, call for help if you’re being abused by friends, family, advocates or healthcare workers.
- Compartmentalise your medical trauma. So you had a horrible, no good, very bad, awful healthcare experience? Take a deep breath. Find a safe space: a park, a cafe or a quiet bench to take a seat on. If you’re in hospital, ask to close the curtains. Call a friend or advocate. Have something to eat or drink. Use any personal skills you have to re-centre yourself: meditate or focus on your breathing. Remind yourself that you’re worthy of being treated well and that the icky behaviour of some healthcare workers or doctors doesn’t define your self worth. You may find exercise or taking a shower or quiet down-time like watching a movie or listening to music will help you to re-centre yourself.
- Do what you can when you can to maintain or improve your quality of life. Find small things that bring you joy that are not exhausting. Treat yourself with love and care and respect.
- Create social networks outside your patient groups. You need ways to be involved in life that don’t simply refactor your identity as “person with disabilities.” Your new medical condition or disabilities are not your identity in totality — though it may feel like it at the start as you adjust.
- Find yourself a bunch of cheerleaders. Let friends, family and neighbours know what you’re going through. Seek out people who love and care for you and make you feel good to be alive.
- Check your medication interactions. Don’t expect that your doctors will always know the medication interactions when prescribing. If you’re unsure, talk to your prescribing pharmacist.
- Consider doing less to get more done. Sometimes just doing one thing a day will be more useful than doing 20 things poorly.
- Change your expectations. So you were a high-powered executive? A stellar athlete? An A+ student? Things may have to change. You might not be able to do all the things you used to. It’s ok to test yourself to find your new limits, but plan ‘buffer zones’ into your days after test days: you may find yourself exhausted or in pain and you may need to reconsider your capacity for work, exercise and study. Don’t beat yourself up. Chronic illness and disability is not a moral failure. You’re not required to ‘overcome’ disabilities or chronic illness with some superhuman 80’s power-ballad montage.
- Be gentle on yourself. Treat yourself like you would your best friend in need of support. Treat yourself like a child whose mother loves them and will sit by them through the darkest nights. You are going through tough times. It’s okay to speak to yourself in a kind, gentle voice to get yourself through the tasks you find hard.
- Life goes on. Plan for the future. Dream. Take lovers. Start learning new languages. Enrol in courses or learn new skills. Take up pottery or knitting. Find new things to care about and give life purpose.
- You cannot know what will happen tomorrow but you can still treat each day like it matters.
Everyone experiences pain in some form at least once in their lives. To me – pain has become an intrinsic part of life as mental anguish blurs into physical throbbing. As a young, seemingly healthy woman, my pain has remained cloaked behind invisibility rooted in the intense emotional pendulum of my borderline personality disorder and the bone-crushing pressure of my thoracic outlet syndrome.
Having first experienced debilitating twinges of my physical disability at the age of 16 and then falling slowly but surely into the void of my mental health illness at age 20, I’ve had a decade to get used to one and six years to come terms with another.
Now, at nearly 26, what I face is less about the pain – both physical and mental- itself, and more about the guilt-ridden burden of feeling like I have to choose between which of my illnesses I allow myself to be vulnerable about.
Chronic illnesses, much like the people who live with it, come in all shapes and forms. Each and all of them are equally valid and painful. Yet, on the days when I find myself hurting terribly from pricks of pain that leave me unable to move my shoulder while also faced with a low mood, I am torn between admitting my physical weakness or my mental stress.
The questions that pop into my mind are not about taking care of myself – as it should be – but of which of my illnesses will take precedence in some imagined vulnerability ranking of my own psyche.
I know I will be slow at work, but do I admit to it being because of my chronic shoulder pain or the dissociation plaguing me? The answer is sometimes one of the two in which case it’s easy enough to solve my dilemma. But on the days when it’s both, what then? Or maybe, the better question is why am I guilty about my own pain?
Dealing with pain shouldn’t have to be a ‘this or that’ situation – but this has been my experience with it. I suffer from two very different types of chronic conditions that require two different types of reasonable adjustments as a journalist.
For thoracic outlet syndrome, I need people to understand that I will be slower turning copy around because my arm, neck and shoulders are in pain. For a random breakdown I didn’t see coming, I might just need a moment to compose myself.
Funnily – or sadly – enough, it’s never about other people. Often my employers are understanding and make adjustments as needed.
However, my own perception of chronic illness as a young woman stops me from admitting to both my vulnerabilities at the same time. So, I find myself informing them of my shoulder bothering me but leaving out the low mood on one day or vice versa on another.
This might be because of the cultural implications of my upbringing as an Indian woman. There’s one memory that stands out of a college professor telling me “if you believe there is no pain, there won’t be.”
As a 19-year-old going through bad episodes of IBS, this was not something I needed to hear but it’s stuck with me. It was an example of how the world I grew up in treated pain in a youngster, instilling a belief that pain when given attention brands you as seeking that same attention with dashes of sympathy.
Or maybe it is the quiet nature of invisible illness that give rise to feelings of judgment from people in those moments when I am swinging between explosive anger and uncontrollable tears, when I choose to use a wheelchair to minimize the pain during long flights or when my 60+ mother carries a heavy suitcase in my place –narrowing eyes and passing glances laced with assumptions about me directed my way.
What I’m seeking is not sympathy or attention though, all I need is understanding and acceptance. From others and from myself. Understanding from others that my pain is not singular, and that sometimes it manifests in every way it possibly can. And from myself, acceptance that it’s okay to admit this and get help when I need it regardless of judgement because how will I teach others not to judge me if I am judging myself?
Chronic illness is not meant to be pitted against each other. Each moment of pain or discomfort, no matter the type is still pain felt deeply. Sometimes, I can push through all the pain, sometimes one is more urgent than the other, but all of it is pain nonetheless. Changing this idea of pitting illness against each other isn’t going to be easy because comparing suffering is a strange human urge nestled in most of us.
But maybe breaking the habit of comparing your suffering in your own mind is a good place to start. ‘This or that’ has been my experience with pain so far, but going forward I hope that it isn’t – and as I embrace my own need to ask for help and hopefully encourage others to provide it with no questions asked or judgment passed.
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The post Living with Both Physical and Mental Chronic Illnesses Shouldn’t be a Case of “This or That” appeared first on The Unwritten.more
Attending a new hospital for one of her numerous chronic conditions, Johanna Gilmore, 34, began to fill out a single-page intake form despite having her massive opus of medical history in hand. She soon realized it was a futile task and scanned the scant document in amusement.
“Seriously? Only five lines for family history?” laughed Gilmore, opening the dusty volume to an illustrated family tree depicting the ancient lineage of her inherited medical conditions. “I spent days on this.”
The form requested her to list her current medications in five lines, as if she hadn’t already meticulously crafted the Apothecary Concordance of her world. The “Surgeries and Hospitalizations” section couldn’t possibly be big enough to encapsulate the major events that shaped her world.
“It’s honestly kind of insulting,” Gilmore said, showing off each colored tab that referenced various doctors, specialists and sages. “I’ve even preserved ultrasounds and placed them chronologically so you have a timeline of the topographical shifts in my body. And they want me to check ‘yes’ or ‘no’?”
After writing “see attached” in every blank space, Gilmore placed the form on top of the hardcover book and lugged it to the front desk, warning the receptionist not to damage the sacred text.
The post Single-Page Hospital Intake Form Cannot Contain Woman’s Extensive Volumes of Medical History Lore appeared first on The Squeaky Wheel.more
Disabled People Are Tired: Public Health and Ableism
We’re all tired, collectively. It has been a long two years of heightened anxiety and isolation as we learn how to live within a global pandemic leaving nearly a million people dead in the US – far more than any other country in the world. We’re burnt out from all of the ways that COVID has forced change in our lives.more