AUTOCARSBD

When I tell people I’m sick, they usually think I mean something short-term and contagious like the flu or a stomach bug. If I say I have a chronic illness, they picture conditions like IBS, a bad back, or chronic migraines. 

The actual reality is all this and more. Yes, and. 

“I’m sick”

I have IBS-like GI symptoms that range from mild diarrhea to agonizing intestinal pain and bloody stool. Migraines can hit me out of nowhere, obstructing my vision, garbling my speech, and sometimes lingering for more than a week. I get flu-like aches, chills, and fatigue that can last for months. Sometimes the fatigue is so intense that I can’t get out of bed, literally crawling on the floor to go to the bathroom. I get orthostatic intolerance, which means I can’t stand up without feeling like puking and/or passing out. 

My connective tissues are corrupted, so all of my joints (including my spine) pop in and out of place causing pain, instability, and a heightened fight or flight response from a brain forced to be ever on alert. My mast cells, the white blood cells responsible for things like asthma and anaphylaxis, and hives, are over-active. They are triggered by things like the sun, marshmallows, and chemicals you didn’t know were in your home or workplace. 

And those are just the big ones. That doesn’t include the symptoms that are too small for me to report in typical doctor visits, like the tingling, numbness, and pain in my extremities caused by neuropathy and spinal instability. Or the dry eyes and painful mouth and throat sores caused by my autoimmune comorbidity. Or the post-exertional malaise that can make it impossible to exercise. 

Sometimes it boggles my mind to try to recount everything that I mean by “I’m sick.” It’s like a cartoon character I saw once as a kid. He was hit by a bus but somehow kept going. Then a fridge fell out a window and crushed him. After, he was blown up by TNT explosives. Then stung by a swarm of bees, trampled by horses, caught in a fire, and pushed off a cliff. Somehow, he kept going.

And I do. I keep going. Honestly, I’m terrified to stop. I’m terrified that our society will label me lazy or weak or a burden or unworthy. I’m worried that I will label myself these things, or my parents, or my partner. But I know that sometimes, my body knows when it’s time to stop, and I need to listen.

Ever-changing chronic illness

Another thing people don’t get about complex chronic illness is that it can be simultaneously ever-changing and numbingly constant. Having diarrhea one day isn’t a big deal. Having diarrhea for fifteen years is a nightmare. But as tough as the relentless consistency can be, I much prefer it to the fickle nature of this beast. You never really know what the day will bring. Sure, I grew accustomed over the years to intestinal pain. But would I also have a migraine? Would I have any energy or be a slug on the floor? Would I be able to eat, or would every food I tried set off my mast cells? 

In Meghan O’Rourke’s incredible book The Invisible Kingdom, she uses the analogy of loss of limb. If you were to lose a leg, you would certainly face challenges, but you would wake up every day knowing that you’d need to adapt to life without a leg. With complex chronic illness, it is not this simple. Who knows which of the hundred symptoms my body will pick off the menu? Or will I be completely fine and spend the day wondering if it was all as bad as I thought because, look at me, I’m fine? There’s no way to communicate ahead of time with employers or friends. It’s hard to get them to even believe, sometimes, when each day can look so different.

Trying to get ahead of it all

In the last several years, I’ve gotten to a place where I at least know what all the options are, so when they pop up throughout the day I can say “I see you, I know what is causing you, and perhaps I have a trick that can help.” I live in fear of the days when a new symptom shows up and I have to go back to not knowing, to seeing specialists and rounds of testing and the trauma that gets dredged up.

It happened, this month. I started working full-time for the first time since my worst crash and subsequent diagnoses. I was excited – I’ve been feeling pretty stable for a year or two – but also nervous that this would cause a flare. What I didn’t expect was for it to cause a new symptom. I started feeling nauseous and bloated. Then pain in parts of my abdomen that were not my usual. Then eating became a battle and my belly swelled until I looked several months pregnant. It felt as if my stomach was paralyzed, that it simply had stopped emptying. 

This is not an abstraction, but rather a very specific fear. EDS can cause gastroparesis, which is paralysis of the stomach. I’ve had a doctor suggest that some of my GI issues were intestinal paresis, but this was different. Then I started feeling dizzy and nauseous whenever on my back, something that can be caused by arterial compression conditions like MALS, another serious complication that can arise from EDS.

And thus came the panic. 

It’s hard not to fear what’s ahead

Another thing about chronic illness is that it is made bearable by forming community. Sick friends are amazing and spoonie communities can be literal lifesavers. Yet being as well connected to the chronic illness community as I am also means that I know too much. I know people with my conditions who have been bed-bound for years, use feeding tubes for nutrition, and are slowly dying. I have seen the downward spiral time and again – a mast cell flare makes eating a challenge and causes worsened joint laxity and PEM, rendering exercise impossible, which then causes POTS to worsen, which increases the brain’s stress response, which worsens all symptoms and causes additional complications… it spirals on and on until you’re too unstable to even receive treatments.

I’ve seen it happen. It’s hard not to fear that I will be next. But the fear makes everything so much worse. 

So, I reloaded my meditation app, got some extra babysitters, increased my therapy sessions, and tried really hard to be zen while ordering tests for MALS, gastroparesis, and other motility issues. I decided that the most likely cause was autonomic since my POTS was also out of control, so I doubled down on salt and water and exercised when I could. Things seemed to clear up a bit. I felt my stomach empty one day and was hit with a need to be in the bathroom forever, as well as a righteous hunger.

After days of eating ravenously and feeling like I was going to puke if I didn’t constantly have something in my mouth, I felt it shift again. My stomach was getting tighter, my belly was swelling, and it was getting harder and harder to get food down, despite the hunger.

I’m in the grey area. I am not so sick that I have severe gastroparesis or MALS. I can mostly get by, go to work, and be somewhat of a parent (with help). But some days it’s too much. Every time I stand up I have to choke down the vomit and will my vision and control of my limbs to return. My despair and fear creep back up. What if I can’t work? What if I’m just not cut out for having a career? Or for being a working mother? What if I have to spend another day feeling this miserable and nauseous, hungry but unable to eat? What if I’m not sick enough to test positive for the big ones like gastroparesis but too sick to be ok without treatment/intervention?

What’s next for me

What I keep reminding myself is that just as possible is the upward spiral. I’ve seen it happen – resting and self-care calm the nervous system, allowing mast cells to chill enough to tolerate a few more foods. This new nutrition (and joy!) gives enough of a boost to introduce some new movement or activity, if not exercise. This movement tightens up the joints and further soothes the nervous system… over time, each decrease in symptoms allows for new treatments, activities, and energy/emotional boosts. The dominoes fall into place until everything stabilizes.

I’ve seen it happen both ways. I feel like I’m on the brink of a spiral. I know that stress and fear can tip it downward, while rest and self-love can spin things up. It is hard, in this world, to accept that resting is the most important job sometimes. But for myself, my family, my friends, my daughter, the students I hope to teach in the future, and the adventures I hope to enjoy, I need, so desperately, to let myself rest.

And so, while I love my work here so dearly, I will be taking some time off to heal. I can’t express enough the importance of role models with chronic illness like Emily, who have openly taken this time for themselves, to help me feel powerful, rather than weak, in my decision. I am so grateful for this community and for the time I have spent with you. And I can’t wait to come back, once I have given my body time for its upward spiral.

The post Knowing When To Take a Step Back When Living With Chronic Illness appeared first on Mighty Well Journal.

This week was the start of Disability Pride Month. We’ve loved seeing posts from our Friends in the Fight sharing their own stories of disability, both the challenges and the pride! One theme that comes up a lot in lived experiences of disability is the nuances of visibility. What makes some disabilities visible? Whether from physical markers, mobility aids, or other medical devices, how does disability visibility change the way individuals and systems in our society recognize disabilities as “valid”? How does it affect our ability to get accommodations and quality health care? 

@zebratissues, @mxdevin, @thediabetesdiva pictured above!

Here are a few things to keep in mind about disability visibility:

1. Mobility aids and other devices are not shameful

Having a disability can be challenging. Some disabilities, however, don’t need to hamper the quality of life with the right accommodations and tools! Devices like wheelchairs, canes, walkers, hearing aids, feeding tubes, vascular access catheters, and so many more, are incredible innovations that can drastically improve life with disabilities. They should be viewed as beautiful, life-giving tools.

Unfortunately, abled people – and representation in the media – often view these tools as negatives. They are visual reminders that someone faces challenges, which bring up uncomfortable emotions. It’s often those closest to us who have the most trouble with these visual reminders because they feel the grief involved in watching someone you love struggle. Mobility aids and medical devices are also markers of difference, something our society hasn’t always taught us to embrace. 

Disability communities are working hard to remove the stigma around devices. There is nothing shameful about using the tools and technologies available to enhance your life! We all do this – we use phone reminders to help us remember things. We use cars and bikes to make travel easier. And we use subtitles in situations when we can’t understand something being said. So why would there be anything shameful about using a wheelchair to get around? Or a cane for balance, hearing aids, or a tube to get the nutrition or medication that helps us stay strong? 

2. Not all disabilities are “visible”

Many disabilities are visible. Our society has taught us to look for wheelchairs, white canes, or scars as a proof of disability. But this is a wildly incomplete picture! People may have disabilities related to hearing, vision, memory, comprehension, communication, pain, energy, fainting, balance… You likely know someone who struggles with one of these issues, possibly without your knowledge! They may qualify for accommodations in school, at work, when traveling, or in receiving income. These barriers can be just as disabling as the disabilities we are taught to look for. 

Invisible disabilities come with their own benefits and challenges. When no one can tell that you are disabled, you don’t have to ward off as much stigma. You can “pass” as abled when wanted. You can choose who is worth telling and who is not. And, you can present any of your identities when meeting someone new, without “disabled” being the identity they first notice. 

Invisibility is not always a benefit, however. It often requires more communication. When seeking accommodations such as different lighting or a space reserved for people with disabilities, we are often asked for justification. “You don’t look disabled” can be used as a challenge, requiring further advocacy. This invalidation of our needs can feel emotionally draining, even triggering. It may be more difficult to receive the disability payments, health care, or accommodations we truly need. We also may be more likely to push through dangerous situations rather than seeking support because we are used to trying to pass abled, or because we are too exhausted to deal with the pushback.

The gray area

And then there are the disabilities that exist in the gray area between visible and invisible. We may have physical markers that are sometimes hidden, or devices that we don’t need all the time. In this gray area, we experience the benefits and challenges of both disability visibility and invisibility. It is ok to go back and forth in whether or not your disabilities are seen! It is ok to use these times of visibility to find support and community, or to just show pride in your disability! We use this flexibility in our other identities – wearing a religious symbol in some situations but not in others, or sharing our sexual orientation with some but not disclosing it with others. It is normal and does not mean you are faking.

Mighty Well products were created out of this gray area. Our PICCPerfectⓇ PICC Line Covers are made to keep medical devices discreet in those moments when you’d rather not have your health be at the forefront of people’s minds. But with bolder color and pattern options, they can also be a fantastic conversation starter when you’re feeling proud and wanting to be visible!

Our medical backpack is made to look like a regular designer backpack, so that you can infuse, tube feed, or just carry all of your medical gear on the go, without anyone having to know. But it can also be a way to proudly bring that part of your life out of your private spaces, to bring others into what your life is really like. And for those times when you want the world to know that you need them to mask up or give you space, but don’t want to have to justify or advocate, you can let our immunocompromised gear do the talking.

Click here to see more of our products designed by patients with disabilities!

3. Disabilities can wax and wane

Not only is it ok to let your visibility be fluid, but sometimes disabilities themselves can come and go. Someone with disabling headaches may be out and about one day and unable to move the next. Cognitive impairment can fluctuate. Pain flares and joint dysfunction are not always steady. Even disabilities involving vision or wheelchairs can go up and down over time.

This can pose a challenge since we tend to view people as either abled or disabled. But someone who lives with disabilities can also have times when they don’t experience these challenges and don’t need accommodations. This does not mean that it is made up or that they don’t genuinely need these supports at other times. It also doesn’t change their identity – people may identify as disabled even if their disability hasn’t flared in years. Our experience with disability can be formative in the development of our personality, how we live every day, and in the communities we are part of.

Many folks with disabilities are accused of “faking” when in these times of health and strength – and the internet has only heightened this. These periods should be a time to live life to the fullest, without worrying about this perception. It is important to be a source of support for people no matter how abled they seem, instead of assuming that they aren’t disabled anymore or minimizing the challenges they faced previously. 

Remember also that you might not know what work is happening behind the scenes. Perhaps this period of ability is only made possible by significant effort, medications, therapies, or lifestyle changes. The time, energy, and money spent on this work also impact this person’s life, and to minimize that by assuming they no longer face challenges doesn’t do justice to everything they are going through. If they run out of funds or energy to keep up this hard work, and thus slip back into a period of worsening disability, it is not their “fault” for letting it happen.

4. Ableism can also wear many faces

Some disabilities come with grief, discomfort, and limitation. For others, the disability itself is not so bad! In fact, living with disabilities can bring us wonderful communities, increased empathy and critical thinking, resilience, and a deep understanding of our bodies and minds. We can thrive, without feeling held back, in environments that are accessible. When our needs are met and we aren’t confronted with stigma, we can reach our full potential. In many cases, it’s not disability but rather ableism that makes life difficult. 

Just as disabilities can come in many forms, so does the ableism we face. It can be systemic, such as fighting through red tape to get the rights and benefits you qualify for under the Americans with Disabilities Act (ADA). It can be fighting to make your disabilities recognized as valid to friends, coworkers, and even doctors who may have been taught to assume that it is all in your head. Or, it may be in small moments when you make an assumption about someone based on their disability or shy away from someone because their difference makes you uncomfortable.

Like any form of implicit bias, we all – including disabled folks – carry these problematic assumptions. There is no need to feel ashamed of this, as shame is rarely a productive emotion. It is important, however, that we watch for our own ableism and work to unlearn these beliefs and reactions. Happy Disability Pride month to all, regardless of (in)visibility! Share your disability story with us in our Friends in the Fight Facebook group, or tag us on Instagram, Facebook, or Twitter.

The post Disability and (In)Visibility: Not All Disabilities Are Visible appeared first on Mighty Well Journal.

June is Myasthenia Gravis Awareness Month.  If you have never heard of MG, you are not alone!  We reached out to Friend in the Fight Katie McCurdy to shed some light on this autoimmune condition that affects tens of thousands of Americans.

Katie McCurdy is an autoimmune patient, designer, and founder of Pictal Health, a company helping patients tell their health stories visually. Learn more at katiemccurdy.com and pictalhealth.com.

diagnosis 

When I was 13, I was sitting at dinner with my family and my mom said, “why are you laughing like that?” I ran to look in the mirror and was met with a strange, snarling expression instead of my usual laughing face. 

The symptoms came on that quickly. Perhaps it wasn’t overnight, but it was very fast. Sudden facial weakness meant I was having trouble smiling and playing the clarinet, and my arms tired while washing or brushing my hair. My eyes felt droopy and I had double vision while looking to the right. I felt fatigued all the time.

I was incredibly lucky that my pediatrician immediately suspected Myasthenia Gravis, a neuromuscular autoimmune that causes weakness. She referred me to a local neurologist who confirmed the diagnosis within weeks of my first symptoms. 

symptoms 

Myasthenic weakness is caused by a breakdown in the nerve synapse. But what that weakness looks like can be different from person to person; they call MG the ‘snowflake’ disease because it affects everyone differently. 

There are common sub-conditions: Ocular MG, which affects just the eyes and causes double vision and eye drooping, and Generalized MG which causes more widespread weakness. Many people with generalized MG have weakness in their limbs that makes it difficult to stand, walk, and lift their arms above their head. As someone’s symptoms worsen during a flare, they may have trouble talking, chewing, swallowing, and even breathing – this is called a myasthenia crisis and can potentially be deadly. 

I am lucky that my symptoms have not affected my limbs too much, and I have also never had a breathing crisis. But my facial weakness – the inability to smile or make normal facial expressions – affected me mentally and emotionally for 25 years. I would avoid talking to people in public if I wasn’t having a strong face day. I would worry that my smile/snarl would come across as sarcastic or just plain weird. 

diagnostic delays

Many people face years of symptoms before finally getting their diagnosis (the average time to get an autoimmune diagnosis is about 4.5 years). I am grateful my path was so short and efficient. 

I have personally known people who have been through horrible, demoralizing diagnostic journeys on their way to an MG diagnosis. A family friend, a man in his 70s, went through multiple eye surgeries that attempted to ‘fix’ his newly droopy eye; but since the eye was drooping due to MG muscle weakness, these surgeries were ineffective and frankly totally inappropriate – his ophthalmologist should have known that MG could be the cause of a droopy eye. 

Another friend has faced extreme medical gaslighting because she is one of the 10% of MG patients who do not have detectable biomarkers that could lead straight to a diagnosis – and she happens to have a mental health history. She has been told over and over that her symptoms are in her head, as she struggled to walk, stand, hold her head up, chew, swallow, and even breathe – classic and dangerous symptoms of runaway MG. 

treatments

Fortunately, there are a few different treatments for MG patients. I’m not an expert in all of them, but I’ve taken a medication called Mestinon for 30 years; I’ve also taken the corticosteroid Prednisone for 25 years. (My doctors are not happy about this, as Prednisone leads to osteoporosis and other side effects, but my body has become dependent on it so I continue to take a low dose daily.) Prednisone is one of many immunosuppressants, drugs that reduce the immune system’s activity and therefore reduce autoimmune symptoms. I take another immunosuppressant called Cellcept, which was originally used in organ transplant patients. 

Even with these three drugs, my symptoms were still noticeable and interfered with my daily life. Finally, in 2017 I started IVIG – IV Immunoglobulin infusions. Within a few days, my MG symptoms were simply gone. I had a strong smile for the first time in 25 years. My voice strength came back, and my eyes felt more ‘open.’ I felt more alert. I could fully participate in yoga classes, and my arms and legs quickly became stronger. Now I get home infusions (administered by my awesome home infusion nurse Amy) two days per month, for five hours each day. 

Finding a treatment that works has been life-changing. I’ve had more strength and energy at work, and finally don’t have to worry my voice will give out when I’m giving presentations. My inner extrovert has finally been released: I am happy to stop and talk to any friend or acquaintance at any time! 

So life is drastically improved for me (though I still deal with rolling symptoms from my other autoimmune condition, Sjogren’s Syndrome, and allergic symptoms resulting from Mast Cell Activation Syndrome.) 

IVIG has worked for me, but it doesn’t help everyone. Many people continue to try different treatments without fully resolving their symptoms. Right now, there are some new MG drugs being released – I feel hopeful that patients like me will have lots of options and that more folks will find something that works for them. 

community 

I haven’t really been an active part of any MG communities. Since I got MG when I was 13, and the condition mostly affects older people, it was hard for me to identify with others at the MG support groups I attended. I did travel to Miami one year to attend the Myasthenia Gravis Foundation of America’s annual conference, and I met lots of other young people there; the experience was really important to me and helped underscore just how different each person’s symptoms are. 

tips for other MG patients

Find a doctor who listens and who understands MG. My neurologist, Michael Hehir at the University of Vermont Medical Center, always makes time to answer my questions and is up-to-date on best practices and treatment options for MG. It’s a huge relief to know I have a doctor I can count on. 

My first neurologist gave me a tip that I’ve used many times: If you’re having double vision due to MG, wear an eyepatch or put a piece of scotch tape over one lens of a pair of glasses. This effectively limits your vision to one eye and makes it easier to get through your day.

Watch out for magnesium. This supplement can be helpful for many, but it can also flare MG symptoms. I’ve re-learned this recently.

Stress and lack of sleep are big symptom triggers for me, and I suspect they are for others. Stress management is one of the best things we can do for ourselves. 

It’s worth playing with dietary changes to see if this helps your symptoms. I have found that my autoimmune symptoms calm down when I avoid foods that have dairy and gluten. But each person’s food triggers are different.

And of course, be kind to yourself and meet yourself where you are! With autoimmune conditions, we don’t know what each day will bring. 

The post Myasthenia Gravis Awareness Month appeared first on Mighty Well Journal.

Diversity inclusion in the workplace can have benefits for all involved.  Not only does it make our society more equitable, but having diverse perspectives – and listening to those voices – is good for business.  We all bring different experiences and strengths and are mightier together.

Wanting to be more inclusive is wonderful, but hiring more diversity without shifting the culture and setup of your workplace can actually be harmful, as the new employees may find themselves in situations that do not meet their needs. If creating an inclusive work environment feels overwhelming, that’s ok! Change is hard, especially when unsure of the best way to go about it.

As a company led by patients with disabilities, we know what it’s like to find the right work environment.  We’ve written about searching for jobs that fit your needs and advocating when needs aren’t met. But the heavy lifting doesn’t need to be all on employees!  If you are an employer wanting to make your own business more inclusive for folks with chronic illness and disabilities, here are some tips to get you started:

1. Job sites focused on disability inclusion in the workplace.

Inclusion of employees with disabilities may seem trickier than the inclusion of folks of diverse races or genders.  Some employers worry that this may mean disabled workers won’t be able to do a good job.  It’s true that, by definition, our disabilities may make aspects of a traditional job difficult, but that does not mean we are any less capable or valuable than abled employees.  We all have strengths and weaknesses.  Someone unable to access a second-floor office may be an outstanding leader.  Someone with a compromised immune system who needs to work from home at times may be incredibly efficient.  Someone with hearing impairments may be uniquely creative.  The label “disabled” does not actually tell you anything about an employee’s potential.  In fact, the only thing it does tell you is that this individual has had to find their way in a world that is often not accommodating; this need for frequent workarounds creates tremendous resilience, problem-solving, and communication skills – all extremely valuable in a workplace.

This understanding that people with illness and disabilities are uniquely capable workers was the foundation for Chronically Capable, an organization that helps connect sick and/or disabled job seekers with inclusive employers.  It was founded by Hannah Olson, a disabled Lyme-warrior who knew her potential was much more than what she could bring to an unaccommodating workplace.  It works like other job listing sites, but more than just searching for skill sets, resumes, and job descriptions, Chronically Capable asks its users about specific accommodations – can you offer flexible hours? Remote work? Visual aids?  Even better, Chronically Capable provides education and resources for employers, so not only can you attract jobseekers by displaying which accommodations you are able to provide now, but they can make your journey to becoming more inclusive much easier.

2. Explore accommodations for disability inclusion in the workplace

Ok, so you want to be more inclusive and are willing to learn what that might mean for your company. Still, the legal side of providing the necessary accommodations for folks with disabilities have you feeling nervous.  That’s ok – if the ADA (Americans with Disabilities Act) is not familiar, this resource can help you navigate its nuances.  Nervous about holding conversations with your employees about what “reasonable accommodations” might look like?  Here is a guide to help you think things through before a meeting with a disabled employee.  And finally, here is a list of potential accommodations that can help you think outside the box!

3. Small steps can make a big difference for disability inclusion in the workplace

If you have not lived with chronic illness or disabilities, you may feel overwhelmed when considering how to accommodate the vast array of disabilities employees face.  The good news is that there are many small steps you can take that make a massive difference.  Not only that, but most of these tweaks can benefit all employees – not just those with relevant disabilities!  For example, written agendas sent before meetings may help people with brain fog or hearing impairments; they are also good for introverts.  Here are a few examples:

• Live captions on zoom calls and videos
• Spaces with different lighting/noise-level options and scent-free spaces
• Seating (and standing) options
• A refrigerator can help with tricky food needs, medications, or breastfeeding moms
• Accessible presentations
• Remote work options

4. Disability inclusion in the workplace

The Covid-19 pandemic has held a magnifying glass to the gears that keep our society running.  While it has come with significant pitfalls, many people with illness and disabilities have actually found their needs are better met since 2020.  Remote work allows us to be in our own space with all the supplies and accessibility we need.  It also tends to allow for a more flexible schedule, so anyone who benefits from naps, daytime IV infusions, or frequent meals no longer has to make these needs visible.  We can work lying down or in comfortable clothes. 

We know these changes are possible.  Now is the time to make these options available even when not in lockdown.  Yes, working in person can benefit collaboration, morale, informal check-ins, etc.  But having the option for remote work when it’s not necessary opens the doors to many who would otherwise be unable to meet their potential.  For folks with conditions that come and go, being able to work remotely during a flare could mean the difference between continuing to work vs. having to take a leave of absence.  Note that, like all accommodations, it is likely that abled employees will benefit as well.  Parents may appreciate being able to work from home when their kids are sick.  People with long commutes may get more done if they do not have to waste an hour to navigate transit.

Not only are our workplaces in a state of flux from the pandemic, but we also have a worker shortage.  Advertising that you value disability inclusion in the workplace – and using this fluctuating time to shift your environment to be inclusive – can give you an edge in attracting the talent you want.

The post 4 Tips to Foster Disability Inclusion in the Workplace appeared first on Mighty Well Journal.

Singer-songwriter Halsey is all about realness.  They have been open about struggles with endometriosis for years.  When they had their first baby last July, they publicly spoke about prioritizing time with their son over time spent trying to get back into shape, and posted a gloriously honest video about what postpartum bodies can look and feel like.  They were upset over comments about how good they looked after performing on SNL; they shared all the work, costuming, and lighting that goes into that image, and that they wanted the world to see what their body really looks like.

More recently, Halsey started getting comments that they “look sick” or had lost too much weight.  Halsey responded by sharing that they looked sick “BC I AM!”  They had been experiencing increased symptoms ever since pregnancy and were still looking for answers.  This month (right in time for Ehlers-Danlos Awareness Month!) Halsey finally got the diagnoses they’d been seeking for years, after being hospitalized for anaphylaxis.  The list includes EDS, MCAS, POTS, and Sjogren’s, in addition to the previously diagnosed endometriosis.

Fans were dismayed to hear that Halsey was sick, but the singer was actually relieved!  Those of us who took years to find our own diagnoses may understand this response – Halsey shared that they’d always been sick, they just finally have validation!  They are hopeful that they can use this new information to heal and get back into the things they love.

Halsey posted on Instagram about the gaslighting they’d experienced before these diagnoses, saying “I went to doctors for 8 years. Trying to figure out what was wrong with me. I was called crazy and anxious and lazy amongst other things… When I wasn’t working I was essentially confined to my home for fear of how I’d feel when I woke up each morning. It took me a long time to get to even having a diagnosis so I’m celebrating!”

We are so grateful for people like Halsey sharing what life with these conditions is truly like!  We celebrate this news with you, Halsey, and wish you well on what we hope is a healing journey ♡

The post Halsey Celebrates New Diagnoses appeared first on Mighty Well Journal.

When I was 24, horribly ill and desperate for a diagnosis, I went to my doctor seeking answers. She was very kind and listened politely but said, “You’re actually quite healthy.” Dumbstruck, I asked how she had come to that conclusion after hearing my symptoms. She replied, “Well, you’re not on any medications.” I can still feel my heart drop into my stomach just thinking of those words. Is being sick with no diagnosis “healthy”? Is being diagnosed with no known treatments or cures “healthy”? I could not help but laugh at its absurdity.

I found my diagnosis a year after that visit (and my vow to find a new doctor). And so began a slew of treatments. Some were helpful; some were not. Still, others were simply nutritional to supplement my strict elimination diet. When I finally had so many pills (in addition to multiple vials of liquid medication) that I had to buy a jumbo-sized pill box, I actually laughed out loud. If only that doctor could see me now!

Keeping track of these medications is dizzying on the best of days and near impossible with thick brain fog. Yet staying on top of things is so crucial to staying healthy. I am grateful for organizer heavens like the Self Care Case that keep all my gear in one place, but that’s only part of the puzzle. Being able to remember to take medications on time is a challenge of its own. You can read more on my creative tips for managing medications here.

We recently reached out to our Friends in the Fight to find out what digital organizers have helped them keep track of medications. Here are some of the cool tools they suggested:

1. MediSafe

MediSafe is a customizable app created to help patients keep track of medications. It offers an easy platform to create a medication schedule and “just-in-time interventions” to keep you on top of that schedule. The technology can also identify trends of when you tend to forget or mix up medications and offer suggestions to help you develop better habits. While the app is patient-centered, you can also share your account with your care team – both medical providers and loved ones – so that you don’t have to do this alone.

2. Drugs.com

This is a website with helpful information about medications and the conditions they treat. The list of resources offered is quite long but includes comparison tools, a drug interaction checker, and discount cards. Their medication guide app helps you keep track of your medications and create a printable medication record to share with your providers – no more racking your brain and getting a hand cramp from writing them all down before every visit.

Do you have a system or tool that works for you? Let us know in the comments below or join the conversation in our Friends in the Fight Facebook group!

The post Top 2 Digital Medication Organizers appeared first on Mighty Well Journal.

This will be my first Mother’s Day as a mom, and I am bursting with thoughts and feelings. So much work, energy, healing, and luck went into making this possible. I have been open about my journey of motherhood with chronic illness – my fears of not being able to conceive, but also of getting pregnant and then being too sick to be a good mom. Being pregnant in the first half of this pandemic and then raising an unvaccinated baby as the world opens up (despite no end to the virus) have been adventures of their own. I feel eternally grateful for the support of my Friends in the Fight – my community of patients and their loved ones who get what it’s like to live with chronic illness.

While I’ve had an outpouring of love and encouragement from my Friends, I’ve had an even larger spout of questions! My not-yet-parent patient Friends are always eager to hear more about what motherhood with chronic illness is like. I remember feeling like that myself, before deciding it was time to give parenthood a go. I genuinely didn’t know – could I do this? Could my body withstand pregnancy? Childbirth? Would I have the energy to enjoy motherhood with chronic illness? Was there anything I could or should do beforehand to give myself and my child the best chance?

And so, on this my very first Mother’s Day, I’d like to share the insights I’ve learned about being a sick mom:

**Note: these are my insights, based on my experiences alone. Just like every chronic illness experience is different, no two pregnancies are the same. 

1. Healing first 

I always knew I wanted to be a mom, but I knew motherhood with chronic illness wasn’t going to be easy. I decided to do everything I could to prepare my body beforehand. At one point I hit a wall, wondering how on earth I could find the time for healing. Thankfully, I was laid off a few months later… this period of unemployment was challenging in its own right, but it allowed me the space to focus on finding good care and the time to rest. I saw a million specialists, nailed down a diagnosis (or three), and diligently tracked my symptoms and triggers to figure out what I could do on my own to avoid future crashes. I honed in on a diet and exercise regimen that caused more good than harm. And did I mention rest? I let myself sleep and lay down to my body’s content. 

And what a world of difference it all made. The fog lifted and the constant pain eased. My gut learned, for the first time in over a decade, what it felt like to work properly. Not only did this healing result in my hormones self-regulating, allowing me to conceive without intervention, but it gave me the energy and routines I needed to get through the next chapter of my life.

This healing was made possible by lucky timing, constant support, and immense privilege. I am ever grateful to have had this opportunity. It also took a lot of hard work, and I mention all this because I am glad every day to have done that work. It gave me tools and habits that I lean on daily. Motherhood with chronic illness is a huge commitment. It’s tough, with a baby, to find moments to cook or exercise, for example. I spent years perfecting the recipes and workouts developed during my healing year so that they are now second nature. I can’t imagine trying to figure out all of that as a new parent. 

2. My body will never be the same

I think rationally I knew this on some level, but I continue to be floored (sometimes literally!) by how drastically my body was altered by pregnancy. I have seen my body change from illness over the years –

• weight fluctuations
• pallor
• scarring
• stretch marks
• various degrees of joint deterioration…

but having so much change over less than a year was remarkable. My hair got so thick and then it all fell out. My thighs grew multiple sizes and then disappeared. Most surprising were the beneficial changes – my spine, which has been fairly unstable for years with vertebrae that rotate and misalign regularly, was solid for the entire pregnancy! My food allergies evaporated, allowing for cravings with no histamine restrictions! Sure, my hips and SIJ didn’t appreciate the extra pressure, and I had my fair share of nausea and headaches. But most of my symptoms actually improved! After years of fearing that my body couldn’t handle pregnancy, it turned out to be the healthiest year I’d had in quite some time. The improvements lasted for several months after she was born, too. I woke up every day with the relief of another day unencumbered.

Not all of the shifts bounced back, however. My pelvic floor, which was further jeopardized by EDS, has not found its way back to a state of comfort and function. My bladder, already prolapsed years ago, makes peeing exhausting these days. It seems my abs will never be what they once were. My periods are remarkably different, but my cycles seem more regular. Less impactful, my feet grew half a shoe size, requiring a trip to the shoe store.

3. Pregnancy is not the only option

I loved being pregnant, and I am so fortunate to have had a positive experience! I know many others, especially with autoimmune issues, who found similar relief from pregnancy, sometimes permanent. One EDS specialist told me that she had a patient who chose to have five children because she felt so much healthier when pregnant! There are many, however, who have not been so lucky. My sister — despite sharing genetics and diagnoses — struggled with joint laxity, food allergies, and POTS throughout pregnancy. I’ve met MCAS patients who were asymptomatic until pregnancy. Pregnancy and motherhood with chronic illness can vary wildly for different people.

While it’s scary to not know which experience will be yours, there are other options for becoming a parent. Of my group of chronic-patient-new-parent friends, one chose adoption and another chose surrogacy. Both feel that the decision they made was right for their body, and it has been wonderful to witness each process. Pregnancy and birth were two of the most impactful experiences on my body, and while I am glad to have been pregnant, I think it is likely that I will choose another option in the future.

4. Setting up supports

This one is huge. I recently read Hunt, Gather, Parent by Michaeleen Doucleff. I highly recommend it – it was an easy read full of rich cultural traditions and beautiful parenting ideas. Perhaps the biggest takeaway for me was that we were never meant to do this alone. Parenting works best when it’s not just done by one or two people in isolation. Enlisting the support of grandparents, childcare workers, friends, aunties… they’re not just good for parents, but wonderful for the kids as well. This is especially crucial for parents with chronic illness. I simply do not have the stamina to care for a baby all the time, especially not if trying to also earn income. 

My partner and I decided to cohabitate with my parents. This move was challenging (as I’ve written about here) but has been a wonderful shift. We now pool the caregiving roles and shifts. Whether I am too sick to cook, my daughter is screaming at 3 am, or my parents need tech support, the weight of this care does not fall on one person. 

The night shift was especially crucial. When my partner went back to working nights, I was very afraid for my health. I do not function without sleep. My incredible parents took shifts with the baby to make sure I could get rest. They communicated boundaries to make it sustainable – for example my insomniac mother would take the baby if she was already awake but didn’t want to be woken from precious sleep unless absolutely necessary. Often I would have to wait to sleep during the day. But they made sure that I got enough sleep to not have a health crash. 

Whether you’re able to live directly with others or not, having a variety of people around who can offer a nap, an extra set of hands, or a frozen meal makes a tremendous difference.

If you struggle with asking for help (you and me both!), here are some tips.

5. Postpartum isolation

Despite being surrounded by supportive people, I have found this journey into parenthood to be far more lonely than I ever imagined. I have not experienced postpartum depression per se – thanks to SSRIs and lots of therapy – but I have had days in which I felt incredibly lonely. The pandemic certainly hasn’t helped. Motherhood with chronic illness and genetic conditions my conditions (which are linked to long Covid) means we’ve been very careful about exposing our daughter to unmasked strangers. So if I’m with her, I can’t even go to the grocery store to interact with adults. 

Between Covid outbreaks and skyrocketing costs, we haven’t been using daycare. This means that my partner and I trade off caring for her, so we don’t get much time just us. Most of my friends work 9-5, so by the time they would be ready to hang out in the evening, it is already cutting into my daughter’s bedtime routine. Being chronically ill has made me a champ at long periods alone, but it also means that feelings of isolation trigger me to think about times of illness. 

There is also an unfortunate shadow of sexism cast over the entire experience. Many men in the US aren’t offered paternity leave. Neither of us got any paid time off, but my husband was only able to take a week off, period. With him going back to work weeks before me, patterns were set in place. I took care of our daughter and home because he was busier than me. I got up at night because he needed to be able to function at work. These patterns were necessary at the time, but are difficult to break now that we are both working. 

I work from home so that I can be available to feed her without dealing with pumps and bottles, while my partner gets to hang out with coworkers all day. I have also seen female friends lose out on career opportunities because of having a kid, while their male partners receive promotions the same year. These inconsistencies make the loneliness harder to bear, knowing that my gender makes the isolation so much heavier than if I were male.

I always imagined motherhood as a magical time of love. While I still feel moments of that magic, I wish I had known going in how lonely it could also be. I wish I had set up routines for connection – and set expectations with my partner – beforehand. We are just getting these things teased out almost a year in. Weekly walks (ideally in nature!) with friends, especially other moms and their babies, go a long way. Scheduled weekly time for self-care, rest, or activities that make me feel like me has become a must. Regular conversations with my partner to check in about how we’re each doing and if things feel balanced are also helping quite a bit. 

6. Kids love the floor

My two biggest concerns about having a baby were being able to hold them and being able to stay upright. EDS, one of my diagnoses, has made my shoulders and elbows quite unstable. I can’t even take out the trash anymore. Every time I’ve held a baby in the last few years I’ve had to give them back after just a few minutes. How could I possibly handle motherhood with chronic illness? Similarly, I also have POTS, a form of dysautonomia that makes me feel sick every time I have to be upright. How could I rock or bounce a baby if I can’t stand? 

The good news is that my daughter doesn’t know anything different! I rock her in a rocking chair or bounce her on a ball. I use carriers, strollers, and slings (or whoever’s around) when my arms can’t do the lifting. The greatest discovery has been how much babies love being on the floor! Not only that, but she loves it when I join her on the floor. This is my ideal situation! I spend hours of every day just laying down. I even have a memory foam mattress topper and a plethora of pillows on the floor so that I can lounge without too much pain or joints popping out of place. We have toys and books within arm’s reach and the space is babyproofed enough that if she were to crawl away, I don’t need to chase after her.

All of my fears of what would happen on a bad day have evaporated. Sure, there are occasional days when I can’t safely parent, and #4 is crucial in those cases. But for medium-bad days, I can get the rest I need without her knowing the difference. I never knew another human being to be so perfectly on my level.

7. Teaching my truth

This one has not come up in practice quite yet, as my daughter is not quite speaking. I read Glennon Doyle’s Untamed while pregnant and something that resonated with me was the idea that we don’t need to hide our painful truths from our kids. We aren’t necessarily doing them favors by sheltering them from our struggles or by pushing through our pain to “show up” for them. When we do this, we teach them to not have boundaries or for themselves.

What if, instead, we show them our truth and model what it looks like to practice self-care? I have watched my sister raise her children through debilitating symptoms and thought about how I’d want to proceed, should I get that sick again. The odds of my kids having my illnesses are quite high. I want them to know that it’s ok to be sick. Better yet, it’s ok to share their experience, to not hide, and to advocate for their needs. So although I know my daughter doesn’t understand many words yet, I find both comfort and strength in telling her my needs on those bad days. 

“Mama has a lot of pain today.” “Mama is very tired.” “Let’s play on the floor now, but if I’m feeling better later, I would love to go walk outside!” “Thank you for the quiet snuggles – Mama really needed that today…“

Motherhood with chronic illness can be challenging. But, sometimes she will smile, kiss my face, and then play with her toys while I take a minute to close my eyes. In those moments, I know that yes, I can do this. We can do this. ♡

The post Motherhood With Chronic Illness: 7 Things I Wish I’d Known Beforehand appeared first on Mighty Well Journal.

I taught for years in alternative schools and found that too often the students found themselves in my programs because their needs were simply not being met in school.  For many, it was because they didn’t quite know what their needs even were.  Some were on the cusp of a medical diagnosis, were working through mental health challenges, or were housing-insecure and just couldn’t focus on school with everything going on.  Most of these students, for one reason or another, struggled with executive functioning.

Executive Function (EF) skills are not often taught explicitly in school the way we teach reading, math, or the scientific method.  EF skills are things like self-regulation, memory, organization, and time management.  They are crucial for school success, but even more so for adult life.  Some of us pick up these skills innately or learn them through watching adults in our lives who use them successfully.  But for many, underdeveloped EF skills are a significant barrier in life. 

I have obviously seen these barriers in my work as a teacher, but it has also played a tremendous role in my work with the chronic illness community.  This aspect of neurodiversity is complicated, but there are a number of common reasons someone might not have great EF skills.  ADHD and ASD tend to come with EF challenges.  High levels of stress can also affect this part of the brain; I’m sure we’ve all noticed when times get tough that our memory, focus, and ability to think through complicated situations go out the window.  Overwhelm, lack of sleep, and pain can also have these effects.  It is then unsurprising that those of us dealing with chronic illness would struggle with executive functioning.

The catch-22 is that EF skills are crucial to managing chronic illness.  Taking medications on time, keeping track of doctor visits, sticking to a medically-necessary diet, remembering to do PT, creating a self care plan… these seemingly small speed bumps on our road to wellness can easily derail us if we don’t have strong EF skills.

Whether you have diagnosed neurodivergence or are just foggy and overwhelmed, here are a few tips to help build EF skills:

1. identify the barriers

As always, the first step is naming the problem.  Take a minute to reflect – where are you struggling?  Are you not able to control your emotions or impulses?  Does starting a task feel impossible and sustaining focus is a joke?  Do you lose track of time and miss important meetings or just lose track of your keys and medications?  Whichever EF skills you struggle with, write them down and take a minute to reflect – which ones are impacting your life the most?  Which ones feel like “low-hanging fruit” that you could see positive change most quickly?  Identify one to start working on.  No need to further overwhelm yourself by trying to fix everything at once!  

2. learn more

Yes, this one might be tricky if you’re already struggling to balance your life.  But if you do have time and energy (and brain space) to look into executive function at all, you may find it enlightening!  Not only does it feel validating to read about something you’ve always found challenging and learn that you are far from alone, but many EF skills have simple tips and tricks that can bust you out of your funk.  For example, if you have trouble starting things, try setting a timer for five minutes and simply see how much you can get done in that time.  This lowers your expectation of what you hope to accomplish and often this results in reducing your overwhelm enough to actually get going.

Because EF challenges are so common, there are a wealth of learning opportunities.  Check out online hubs, helpful books, or sign up for a group or coach to get you going.  Fight back any embarrassment or stigma you may feel and remember that what you’re struggling with is extremely common!

More tips for making positive habits here.

3. use tools

Just as there are plenty of learning opportunities for EF skills, there are also ample tools available.  Sticky notes and planners can help with memory and planning.  Timers, reminders, and alarms can help you get started, manage your time, and sustain focus or motivation.  The right backpacks, furniture, and other organizers can help you keep track of your items.  Something as simple as music can be a gamechanger – listen to pump-up tunes when doing boring tasks and find a focus playlist you like for getting work done.  Whatever EF challenges you face, there’s probably an app for that – here are some favorites for organization, self-regulation, time-management, memory…  We often feel the need to do these things on our own, but it can make a world of difference to let a tool carry the weight of making a change for you. 

Check out our Brain Fog Fix planner here!

4. care for your brain

Creating new habits rewires your brain for positive change.  This work is worth it for the payoff, but anything you can do to grease the wheels will lighten the load!  Getting more (and better) sleep, meditating, eating nourishing foods, and adding in some movement or exercise each day can go a long way.  Taking steps to lower stress and increase mental health are also important.  This could look like taking time for self care, having a friend or counselor to talk through stressful parts of your life, or getting out into nature.

For some of us, EF challenges are solely caused by brain fatigue or emotional stress.  In those cases, caring for your brain and mental health may be the only step needed to get back on track!

Check out more tips for your brain here.

5. accountability and self-love

Making change on your own is tough!  It can help to have someone in your corner acting as a source of accountability.  Consider sharing your goals with a trusted friend or loved one. They can remind you along the way and point out your successes.  Be sure to communicate clearly and openly – they are there for accountability, not nagging!  If it starts to feel that way, talk it out and see if a different type of support would be more helpful.

More on asking for support here.

Unfortunately, we live in a world that adds shame and stigma to EF challenges.  Showing up late or having a messy house can make us feel like bad people, somehow worthy of being judged.  Remember that this is just a social construct!  There is nothing morally wrong with not having been taught these skills.  It is not your fault or anything you should feel ashamed of!  So try to give yourself grace in the moments when you do struggle.  Having this self-love is crucial to success and to maintaining a positive relationship with your accountability supporters.  If you feel yourself starting to feel shame or embarrassment, talk it through with someone.  The best way to dispel shame is by giving it voice to someone trusted.

More on how to find self-love here.

We hope you find these tips helpful!  If you are looking for a community of other foggy and fumbling folks who’ve been there and can cheer you on, check out our Friends in the Fight facebook group!

The post 5 Tips for Navigating Chronic Illness With Executive Function Challenges appeared first on Mighty Well Journal.

Being sick is hard.  There are many times when I look at my life, at all the joys I’ve had to forgo and the thankless work I put in to simply make it through the day, and I wish I could change it all.  I wish I could have energy, that I could eat whatever foods I want and socialize without crashing.  The list of wishes and grief feels endless in those weeks when I’ve been slogging through a flare with no end in sight. I need to turn to my sick friends who understand. 

But when I’m on an upswing, there are times when I actually wouldn’t change it.  I am who I am because of illness.  I am proud of my disabilities and the creativity I’ve built by having to work with them.  Years of pain gave me a deep pool of empathy. Perhaps the greatest side effect of illness is the people I’ve met.

Sick friends have been an incredible support network for me and have become some of my best friends  They get me on so many levels.  They have empathy to match mine but have had to learn boundaries out of self-preservation.  They are some of the best communicators I’ve met, whether by necessity or as a by-product of the therapy prescribed by doctors.  And the communities of sick and disabled folks I’ve found myself in have been loving, warm, and supportive.  

In recognition of these incredible spoonies, I’d like to share with you the top 5 reasons why I love my sick friends with the hope that this can help you find a support network of your own:

1. Connection

I always had trouble making friends.  I don’t know whether it was feeling different than my peers or the shame I carried from my symptoms being deemed “disgusting” by those who discovered them.  Maybe it was just my extreme introversion.  Whatever the reason, that feeling of true connection often evaded me.  I revel in my sick friends today who seem to just get me.  They know so much about my experience without me having to explain.  I share a story and see their heads nod in understanding.  My sick friends have all felt isolated at some point, so they are eager to make connections and are expressive of their appreciation for my friendship.

2. Honest communication 

Another reason I connect so much easier with sick friends is that I can communicate more honestly with them.  You know that feeling when someone asks “How are you?” and your brain is screaming “Honestly, not so good!” but what comes out of your mouth is “Good! You?”  Few moments make me feel more isolated than when I feel terrible but tell someone I’m fine.  I love sick friends who just cut to the chase and say it how it really is.  Not that they dump heavy stuff on me without warning (I’ve discussed the importance of finding the right space for sharing the heavy stuff here), but they are often more honest from moment to moment.  One friend’s response when asked “How are you?” tends to be “Everything is terrible and I’m dying.  How are you today?”  We laugh and acknowledge that yes, things are really tough.  We can then choose whether to dig into why it’s tough or just move on with our day.

3. Empathy

Any struggle in life creates space in your brain to understand the struggles of others.  I often find that sick friends are oozing with empathy.  They know pain, fear, isolation, stigmatization, and discrimination.  They can see it in others and the world around them.   As a result, they are kind and caring.  They stand up for others (when energy permits) and can reach beyond the differences that too often divide us.

4. Problem-solvers

If practice makes perfect, then facing daily barriers makes extremely proficient problem solvers.  Being chronically ill can cause problems as minor as finding crackers in the grocery aisle with no added chemicals to getting the care you need when semi-conscious, alone, and in the care of an ER team who’s never heard of your diagnoses.  While we’d rather not have to face these challenges, it can lead to some incredible resourcefulness and critical thinking skills.  When something goes wrong with my house, my job, my relationships… I call on my sick friends to help me think it through.  We don’t easily throw up our hands and decide it can’t be fixed because, so often in our experience, that simply isn’t an option.  

5. Access intimacy

I came across the term access intimacy recently and it’s my absolute favorite. Coined by disability advocate Mia Mingus, it means the intimate feeling of knowing your accessibility needs will be met by someone.  Maybe they intuitively anticipate what you need before you even ask, or they simply create an environment so accepting and accessible that you feel no discomfort in asking.  As someone with invisible disabilities, speaking up for what I need carries a lifetime of shame, fear of being judged or rejected, and feeling guilty for being a “burden” to others.  With sick friends, I can just say whatever I’m feeling or need.  They validate that my experience is real and empathize that they’ve been there.  They ask clarifying questions to make sure they understand my needs and then put their creative and resourceful brains to the task.  And sure, sometimes in a group of chronically fatigued and disabled people, sharing what I need doesn’t mean anyone else can get it for me.  But having the space to ask is revolutionary in itself.

For more tips on supporting sick/disabled loved ones, check out the relationships section of our blog here!

While I may not feel grateful for being sick, I have immense gratitude that my illness journey led me to such wonderful people.  It took me years to find them, but it was worth the wait.  If you are sick and reading this, I wish for you to find a community of loving sick and disabled friends.  If you are a healthy and abled ally, I hope you will appreciate these gifts that sick friends can bring to your relationships ♡

Looking for your own community of the illest people and their allies?  Join our Friends in the Fight Facebook group!

The post 5 Reasons Why I Love My Sick Friends appeared first on Mighty Well Journal.