Author: Admin

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.

One of the best perks of working with other chronic patients is the authenticity of conversations that come up around the products we create.  Nothing makes me feel so seen and valued like hearing my lived experience from someone else’s mouth!  

This struck me recently at a brainstorming session about Mighty Well’s newest product, the Self Care Case.  The patients in the (virtual) room were sharing what we were excited to use it for.  Most were medical supplies like EpiPens, snacks for low blood sugar, medications, spare face masks, hand sanitizer and other necessities for infusions… but we also each carry items with us that have nothing to do with illness.  Our favorite shades, sunscreen, makeup, cozy socks.

Illness and disability have the tendency to impact every aspect of daily life.  Our morning routine.  What we eat.  Where we live.  What we do to earn a living – or if we can’t work, how we spend our time.  How we go places.  How we connect with others.  How we sleep.  Acknowledging this is helpful at times – I recently saw a tweet from @hijade2madre that said “…Disability shapes my everyday life and I’m going to need you to stop making that be a negative.”  This side of the equation is so important!  Yes, these things impact our every day and do define parts of our identity.

But, like most aspects of our complicated lives, the other side of the equation is equally important: illness and disability are not the only factors that impact our identity!  I may be a proud spoonie who doesn’t shy away from making my disabilities public, but that’s not all I think of when showing who I really am.  I am also a painter, a writer, a community organizer.  I am a mom and a sister.  I love birds and trees and gardening.  I feel the need for queer spaces as much as spoonie spaces.  I’m introverted and sensitive.

I am all of these things and more, regardless of my health status.  There are also ways in which my other identities intertwine with my illnesses:  I love the cooler seasons because heat is a trigger for my symptoms.  Inversely, I still identify as a rugger, despite not being able to play rugby for many years.  I used to struggle immensely with this.  I remember whole therapy sessions wrestling with whether I could still identify as a “good friend” when I was too sick to show up.  I truly believe now that these pieces of our puzzle still exist, even if they don’t all come together right now.

So, who are you?  What identities do you hold?  What do you carry with you day-to-day, physically and metaphorically?  We see you, even the parts that can’t quite make themselves known each day.

Join the conversation in our Friends in the Fight facebook group!

The post We Are Not One Dimensional appeared first on Mighty Well Journal.