How Parents with Disabilities Can Start Flexible Side Gigs and Thrive

 

This is a guest post by Hannah Simpson

For parents with disabilities juggling caregiving, energy limits, pain, or unpredictable symptoms, traditional jobs can feel built for someone else. Disability employment challenges like rigid schedules, transportation hurdles, inaccessible workplaces, and gaps in accommodations make “just get a job” advice land hard. That’s why side gig opportunities and realistic work from home options matter: they can fit around medical needs and family routines while still bringing in steady money. With the right expectations and a clear understanding of the basics, flexible income can support financial independence for disabled parents.

What a Side Gig Really Is (and What to Know First)

A side gig is paid work you do outside a traditional job, often in small, repeatable chunks. It can be remote, local, project-based, or ongoing, and you control how much you take on. It also helps to know you are not alone: many working Americans earn extra income this way.

For disabled parents, flexibility is not a perk, it is access. A few income streams can reduce the stress of one job falling apart after a flare day or a school closure. Before you start, get clear on basics like accommodations, how you will track income and expenses for taxes, and any benefit rules that apply.

Think of it like building a sturdy workbench. You measure first, choose the right tools, and plan for safety, so the project does not wobble later. With the basics set, simple planning and budgeting skills make growth feel far more predictable.

Build Business Know-How That Makes Side Gigs Stick

Once you know what counts as a side gig, the next win is setting yourself up with the know-how to keep it steady. One practical way to boost your business acumen is earning an online business degree, which can help you make smarter choices and grow with fewer surprises.

A business degree can build skills in accounting, business, communications, or management, tools that translate directly to pricing, tracking money, talking with clients, and running day-to-day tasks with confidence. If you want a structured path, business fundamentals degree options, such as the one linked, can help you learn those core skills in one place. And because online degree programs are built for flexibility, it’s often easier to work full-time while keeping up with your studies.

Side Gigs That Work Well for Disabled Parents

The best accessible gig ideas aren’t the ones that look impressive on paper, they’re the ones that fit your real week. Pick skills-based side jobs you can deliver consistently, then use the simple planning and budgeting habits you’ve been building to keep it sustainable.

1. Online tutoring (your schedule, your subject): Start with one subject you can teach confidently and one age group you enjoy. Because online tutoring removes geographic limitations, you can work with learners beyond your local area, which is huge if transportation or stamina is a factor. To make it doable, offer two “office hour” windows per week (like Tue/Thu 7–9 pm) and a 30-minute trial session script.
2. Freelance writing (repeatable pieces, not endless custom work): Choose one lane, blog posts, emails, product descriptions, or accessibility-friendly content, and build 2–3 writing samples in that style. Make your business plan extra simple: decide your monthly income target, then back into the number of articles you need to deliver. A practical starter system is “outline day + drafting day + editing day,” so you’re not forcing all your energy into one long session.
3. Virtual assistant services (a menu of tasks you can actually do): Write a list of tasks that match your strengths, email sorting, calendar scheduling, spreadsheet cleanup, document formatting, customer replies, or simple research. Package them into a mini “service menu” with clear limits (example: “up to 5 hours/week” or “responses within 24 hours on weekdays”). This is where basic budgeting helps: set aside time for admin (invoicing, check-ins) so the gig doesn’t eat your family time.
4. Sell crafts and handmade products (batch work + small runs): If you already craft, turn it into a small, repeatable product line instead of one-off custom orders. Make 5–10 of one item at a time, track your material costs, and price so you’re paid for your labor, not just supplies. A simple plan: one making day, one photo/listing day, and one packing day per week.
5. Digital products (create once, sell many): Turn what you already know into templates, checklists, planners, or short guides. Start tiny: one printable or one template that solves a clear problem (meal planning, IEP meeting notes, medication tracking, chore charts). Use your business fundamentals here, write a one-paragraph “who it’s for + what it fixes” description before you build anything.
6. Remote customer support (scripts and steady hours): If you like structure, this can be a good fit, especially if you prefer clear expectations and repeatable work. Look for roles with set shifts and written scripts, then protect your energy by choosing predictable hours (example: three 4-hour blocks weekly). Track what you earn vs. the time cost so you can decide if it’s a “keep” or “quit” gig after 30 days.
7. Transcription/captioning (focused work in short sprints): This is detail-oriented work that can be done in 20–45 minute chunks, great if you manage pain, fatigue, or attention limits. Set up a quiet workspace, test your accuracy on a short sample, and create a pacing rule (like “two sprints, then a break”). It’s also a nice way to build a predictable weekly baseline income.
8. Bookkeeping and invoicing help (systems for people who hate systems): If you’re comfortable with spreadsheets and routine, offer basic bookkeeping support: organizing receipts, reconciling simple records, creating invoices, and tracking due dates. Keep it beginner-friendly and narrow, one or two repeatable packages, so you don’t accidentally become someone’s full finance department. Clear boundaries and a written scope protect both you and the client.

Side Gig FAQs for Disabled Parents

Q: What are realistic places to find flexible side gigs online?
A: Start with platforms that match your work style: tutoring marketplaces, freelance job boards, and remote customer support listings. Then add community-based leads like local parent groups, school newsletters, and disability networks where people hire based on trust. Keep your search focused by using one job title and one hourly range for two weeks.

Q: How do I handle taxes when I’m freelancing part-time?
A: Assume you will need to set aside money for taxes, even if it’s “just a small gig.” Track income and expenses weekly in a simple spreadsheet and save receipts in one folder. If your income becomes steady, consider quarterly estimated payments and ask a tax pro one targeted question rather than paying for a full consultation.

Q: Should I be a sole proprietor, LLC, or something else?
A: Many people start as a sole proprietor because it’s simple, then switch if risk or income grows. If you’re hearing terms like incorporation, remember that turning your business into a limited company is one formal option, not a requirement on day one. Pick the simplest structure that lets you invoice confidently.

Q: What contract details protect me from scope creep and burnout?
A: Your contract should spell out what you’re doing, what you’re not doing, and when revisions stop. The scope of work is the piece that keeps “quick favors” from turning into endless unpaid extras. Add communication hours and a clear payment schedule so your health and family time stay protected.

Q: Can I market my side gig without spending money or constant posting?
A: Yes. Start with one clear offer, one short sample, and one place to send people, even a simple page or PDF. Do tiny outreach: message five warm contacts, ask for one referral, and post one helpful tip weekly that answers a common question.

Q: What disability workplace rights matter if I take remote employee work?
A: If you need adjustments to do your job, a practical first step is to request a reasonable accommodation through your employer’s process. Be specific about what helps you perform, like flexible scheduling, written instructions, or assistive tech. Keep documentation of requests and responses in one folder.

Build Your First Flexible Side Gig, One Small Weekday Step

When parenting, pain, appointments, and paperwork all collide, starting a side gig can feel like one more impossible thing to manage. The way through is the DIY business startup mindset: keep it simple, start tiny, and build systems that respect real energy limits, this is empowerment through entrepreneurship, not hustle. That approach builds confidence in side gigs because progress shows up as proof, not pressure. Start small, stay consistent, and let your skills pay you back.

Hannah Simpson is a stay-at-home mom of two with a passion for DIY crafts. She thinks being “a maker” is a great hobby for parents and kids alike, allowing them to explore different mediums, spend a little or a lot of time on their pursuit, take time to focus just on what they’re making, and create something unique that makes the world a little more beautiful. As someone who uses a wheelchair, Hannah also finds DIY crafting empowering. By making accommodations based on her needs, she can show her kids that their mom can tackle any DIY project that other moms and dads can. She hopes her new website, Able Crafty, will inspire everyone who visits to make something that brings them joy no matter their age or abilities.

How Parents Can Manage Anxiety to Support Their Children with Rare Diseases

 

This is a guest post by Katie Conroy

Parents of children with rare diseases carry a unique, constant pressure: staying medically vigilant while trying to keep family life steady. Parental anxiety can slip into daily routines through tone, urgency, and reassurance-seeking, even when parents work hard to hide it. Over time, that stress can shape children’s well-being, affecting how safe they feel in their bodies, how they interpret symptoms, and how they handle uncertainty. The goal isn’t to erase worry or blame parents for having it, but to notice the impact of anxiety on children and respond in ways that support managing anxiety in families.

Use a Two-Part Check-In: Spot Anxiety in You and Your Child

Anxiety can become “contagious” in a family, especially when rare disease care keeps everyone on alert. A quick two-part check-in helps you notice what’s happening without guilt and choose a calmer response in the moment.

1. Do a 30-second body scan for parent anxiety: Look for signs of anxiety in parents such as a tight chest, jaw clenching, racing thoughts, irritability, snapping, or urgency to “fix it right now.” Name it simply, “I’m in alarm mode”, because labeling emotions increases emotional awareness and creates a small pause before you react. If your shoulders are up by your ears or you’re talking fast, assume your child can feel that intensity, even if you haven’t said a word.
2. Run a child-focused scan: body, behavior, and sleep: Anxiety symptoms in children often show up as stomachaches/headaches, clinginess, reassurance-seeking, avoidance of meds/procedures, tearfulness, or sudden anger. Sleep changes and increased worry questions are common early clues; if anxiety is already in the room, it helps to remember how common it is, 1 in 12 children ages 3–17 in the U.S. have anxiety. Treat the scan like information-gathering, not a diagnosis: “What’s their signal right now?”
3. Separate facts from predictions (out loud): Rare disease stress makes the brain jump from “today’s symptom” to “worst-case future.” Try a two-line script: “The fact is ____. My worry story is ____.” This protects your child’s well-being by reducing scary forecasts in front of them and keeps parent-child anxiety dynamics from escalating into a spiral of reassurance and panic.
4. Use a 60–90 second downshift before you problem-solve: When you notice your own anxiety rising, do a quick physiological reset: exhale longer than you inhale for 6 breaths, drop your shoulders, and unclench your hands. Then lower stimulation, soften your voice, slow your words, and reduce rapid-fire questions. This works because kids take cues from your nervous system; your calm body becomes a cue of safety.
5. Validate, then offer two choices to restore control: Start with: “This is hard. I’m here.” Then give two small, real options: “Do you want to hold my hand or squeeze the pillow?” “Do you want medicine with water or juice?” Choices reduce anxiety by giving a sense of agency without pretending the situation is optional.
6. End with a 2-minute reconnect and a tiny plan: After the moment passes, repair quickly: “I got tense earlier, I’m practicing staying steady.” Ask one question that builds awareness: “Where did you feel the worry in your body?” Then pick one micro-step you can repeat later, one breath pattern, one phrase, one calming activity, so your family has a reliable reset when stress spikes.

Build a 10-Minute Self-Care Mini-Plan That Actually Fits

Once you’ve spotted how anxiety shows up for you and your child, the next step is protecting your baseline with small, repeatable self-care. Self-care doesn’t have to be elaborate to help regulate anxiety, it just needs to happen consistently. Make time for exercise in ways that fit real caregiving and workdays: take the stairs instead of the elevator, or use part of your lunch break for a short walk. Many parents find that simple healthier lifestyle choices are easier to maintain than big overhauls, especially during intense weeks.

Daily Calm-Builder Habits for Rare-Disease Parenting

When your child’s health feels uncertain, routines are what make steadiness possible. These habits lower your reactivity, model coping, and give your family a simple plan you can return to on hard days.

Two-Minute Body Reset

●     What it is: Do a five-minute breathing exercise or shorter, focusing on slow exhales.

●     How often: Daily, especially before appointments.

●     Why it helps: It signals safety to your nervous system and softens anxious spirals.

Trigger Notes Together

●     What it is: Help your child identify triggers and name body clues and feelings.

●     How often: Weekly, plus after big flare-ups.

●     Why it helps: It turns overwhelm into patterns you can prepare for.

Worry Window and Close

●     What it is: Set a 10-minute timer to write worries, then stop.

●     How often: Daily or 3 times weekly.

●     Why it helps: It contains rumination so it does not run the day.

One Clear Next Step

●     What it is: Choose one action you can finish today and do it first.

●     How often: Daily.

●     Why it helps: Small wins rebuild control when symptoms and tests feel unpredictable.

Connection Check-In

●     What it is: Ask “What was hard?” and “What helped?” at bedtime.

●     How often: Daily.

●     Why it helps: Your child feels seen, and you learn what support works.

Common Questions Parents Ask About Anxiety and Care

Q: What counts as parental anxiety when your child is medically complex?
A: It can be constant “what if” thinking, irritability, trouble sleeping, or feeling keyed up before labs and calls. Many parents assume it only “counts” if there are panic attacks, but worries and fears can be anxiety too. Naming it helps you respond rather than push through on autopilot.

Q: How does my anxiety affect my child if I never say it out loud?
A: Kids often notice tone, pace, and tension even when adults stay quiet. Research following families found parental anxiety predicted child anxiety, which is a good reason to practice small calming skills early. A practical step is to slow your voice and body for 30 seconds before answering questions.

Q: Why is it so hard to manage anxiety when appointments never stop?
A: Chronic uncertainty keeps your nervous system on alert, so “relaxing” can feel impossible. Aim for regulation, not perfection: choose one repeatable micro-skill you can do in waiting rooms and parking lots.

Q: When should we consider mental health support as a family?
A: Consider it if worry is disrupting sleep, relationships, decision-making, or your child’s sense of safety. Therapy can also help when you disagree about risk, treatment choices, or how much information to share.

Q: Can I care well for my child and still need help myself?
A: Yes, needing support is a sign you are carrying something heavy, not failing. Start by telling one trusted person what would genuinely help this week, like a ride, a meal, or sitting with you during a phone call.

Sustaining Calm So Your Child’s Care Stays Steady

Rare disease parenting often means living with uncertainty while trying to stay strong for everyone else, and anxiety can quietly drain focus and energy. The path forward is long-term anxiety management grounded in parental self-awareness, steady support systems for families, and realistic child well-being strategies that can flex with changing needs. Over time, this approach supports sustained mental health, clearer decision-making, and a home environment that feels more predictable even when care is complex. Manage the anxiety, and the whole family’s capacity expands.

Katie Conroy enjoys writing and created AdviceMine where she shares advice from her experiences, education & research. She particularly enjoys writing about lifestyle topics and created the website to share advice she has learned through experience, education and research

Caregiving for Mom - The Last Years

Jenny, Mama, and Daddy

The conceptions we create of our parents over time as we grow from children to adults can be quite interesting to say the least. We come to learn new details about our parents that challenge those long held perspectives we've built, leading us to see our parents in a brand-new light.

This has been my experience with my mother and my understanding of her has a strong patient advocate. I grew up not only believing but knowing my mother to be a fierce advocate for me. I learned how to be a patient advocate for myself and others by mom's example, seeing how hard she advocated for me over the years into my adulthood even. Naturally, I presumed that my mom was just as strong of an advocate for herself as she always had been for me. And perhaps she always was. I know she was with insurance companies a fierce advocate for all three of us. But outside of the home, I wasn't there to witness her self-advocacy most of the time.

I started this article months before we lost my mom. When I re-read it to try to finish it soon after losing mom, I felt like I had been so unfair to mom about her level of self-advocacy. The day before she was hospitalized, I had even told mom, "I wish you took your health serious" in frustration when mom and dad told me that neither one of them had yet to call her Urologist two weeks after her ER trip for UTI. Mom replied "Whatever" in disgust. That's all the energy she had to spend on it. I apologized to her the next day when I saw her. She told me it was okay. I'm so glad I made sure to apologize to her.

In spite of mom's multiple health conditions that caused pain and limited her absorption, she was holding her own remarkably well until 2023 when her symptoms appeared to be out of control to me - her blood sugars wildly high with extreme lows, her mental capacity affected by relentless fatigue, ongoing urinary infections, and chronic pain. As an adult, I never shied away from sharing my medical knowledge with my mom for helping her to receive the best medical care and resources available. But I didn't interfere or assist with her medical care until 2023. I didn't know she actually needed me to but as I began to discover the magnitude of her worsening symptoms, the more I realized my conception of my mom as a strong patient advocate in a large part seemed to only be applied to her advocacy regarding my care - she wasn't using her advocacy skills for herself, and she had all kinds of understandable reasons to why that was. What I discovered through it all, was I don't think mom knew the right questions to ask and she became so overwhelmed with multiple medical appointments every week and her body was becoming increasingly tired, weak, and painful that the frustration of it all led to a bit of indifference at times that I don't think necessarily was there in years prior. 

We agreed that I'd take an active role in her medical care going forward, acting as her liaison between her and her doctors, assisting with arranging care and going to appointments with her as needed. By the one-year mark of my active role in her caregiving, she was in a lot of ways in a better place physically than she was before I took over her care. I still grapple though with trying to understand how my mom allowed herself to get into some of the situations I found her to be in because she didn't advocate for herself when she fiercely, unashamedly advocated for me even when I hadn't asked her to and especially when I told her not to, and she still did. 

With my assistance, we changed some of her providers to ones I trust. I have a long-held mistrust of medical providers on the count of my medical trauma as a child, so when I trust a provider, it means a lot. This included changing her Rheumatologist and Endocrinologist. Over the last year of her life, she was diagnosed with Rheumatoid Arthritis and was in the process of being scheduled for an infusion to reduce her high inflammation markers. She continued to have chronic urinary infections that her Nephrologist believed resulted in a bacteria colonization of her bladder and had become drug resistant. In addition to the Nephrologist, she was also followed by a Urologist who aided with managing her urinary infections. We were receiving the guidance of a Diabetic Registered Dietitian who worked in conjunction with her new Endocrinologist for her Diabetes. She also was receiving treatments from a nerve renewal clinic for her Neuropathy that had improved her mobility and balance. 

I'm fortunate that dad remains in pretty good health and together, we were able to coordinate care for mom. As someone with a multitude of chronic health conditions myself, I honestly don't know how others manage their own health and that of their loved one without help especially if the caregiver is still working. I know it was a lot at times even for dad to leave the house to run errands or complete other necessary business due to fear of leaving mom alone. A fear that was understandable and dependent upon not just the day but the hour. It worked well for us that dad was able to attend and take her to her appointments and I focused more on the communication with providers and coordinating care as I have a deeper understanding of the behind the scenes and medical details. This knowledge, sometimes an annoyance to my parents, helped them better understand the gravity at times that mom was facing and led me to have some quite frank, heart to heart conversations with my parents. 

Understandably, mom became tired of having so many doctors to see and taking so many medications. She had quite a lot more to cope with than myself. Yet, at times I struggled with her resistance when she told me she didn't want to pursue an evaluation or treatment because she didn't want to have another appointment or another medication or nutritional supplement. I struggled with my patience and empathy at these times as I was transported back in time to my high school years when I wasn't given a choice and in efforts to quite literally keep me alive, I was forced to endure repeatedly painful procedures and follow strict, absolutely dreadful protocols. Mom struggled with a poor appetite and unintentional weight loss from her malabsorption issues from multiple disorders (and as I feared, also Failure to Thrive). I often wanted to scream "I'm just trying to keep you alive!". The nutritional supplement options from 20+ years ago are significantly better in not only options available but also in taste. As a teenager I was forced to ingest foods that made me gag from the taste and odor of them but nowadays, there are protein bars that taste just like candy bars and protein drinks that taste like milkshakes. 

It was in these moments that I had to pause. Patients often feel smothered, controlled, and burdensome in regard to their caregivers and caregivers often feel overwhelmed and consumed by their concern for their loved ones. These feelings though are frequently miscommunicated in ways that hurt the patient-caregiver relationship leading to feelings of resentment. Keeping this in mind, I paused. Arguing is not helpful. Clear communication of feelings and knowledge as to why XYZ is being asked of the patient and why ABC is being resisted by the patient is helpful to come to an understanding of one another and the root issue. It's at these times that I set my parents down for a heart to heart. 

Fortunately, mom responded well to these heart to hearts and they left her with increased motivation, and we were able to devise a plan for how to still pursue an evaluation with possible treatment but closer to my mother's terms. For example, when she told me that she didn’t know if she still wanted to pursue a Hematology referral we compromised on, make the appointment as the Hematologist doesn't likely have any new patient openings for anytime soon and if it's still earlier than you'd like, schedule it further out.

While her symptoms did significantly improve after I started helping in her caregiving, the last 8ish months of her life, her health rapidly declined to the point that I knew if things continued the way they were, she wouldn't survive another year. One of my worst nightmares is losing my parents and is something I've been fervently working to process and heal from in therapy since 2022. Thankfully for my own well-being, I stopped running from the pain of processing my trauma that solidified an unhealthy attachment to my parents. I'm not sure how I'd be able to cope with the events that have been transpiring if it weren't for the intense trauma therapy I continue to receive.

In my opinion, there were 2-3 main areas of focus for decreasing mom's symptoms to allow her a better quality of life and an extension: managing her liver disease, Rheumatoid Arthritis, and urinary infections. 

We made a lot of progress alone in her liver disease by the success of her Advanced Endoscopist (two weeks before her passing) to finally and fully remove a large bile duct polyp that significantly contributed to the development of liver disease. The location of this polyp was only allowing our GI specialist to trim the polyp every 3 months in an ERCP. As the polyp grew, her symptoms worsened and each ERCP was hard on mom requiring additional recovery period. While the Advanced Endoscopist was successful in fully removing this large polyp, another polyp was discovered further up in the bile duct but was scheduled to be tackled in her next ERCP. 

She was diagnosed with Emphysematous Cystitis (EC) just two weeks before she died. EC is a UTI with a gas producing bacteria. This was particularly concerning for me as the mortality rate for EC is reported to be 7% and if not caught early, increases to 20%. This wasn't what ended up killing her though.

Combining this knowledge with my trauma attachment, was devastating for me. However, I coped much better than I would have before I started my intense healing journey in 2022. While I was fearful and anxious, I was able to navigate it with greater ease than in the past and came away from that experience with the realization that I needed to remain alive for mom to receive the care she needed, especially if her health was going to continue to decline. And most importantly, I was okay with being alive for her until her passing. This alone is an incredible display of growth on my part as I've had the long-held wish that I should die before my parents out of fear of how I would even possibly be able to cope and live without them. Through my therapy and before losing mom, I reached a place I knew I could not only envision life without my parents, as difficult as it would be, but I knew that I would be able to manage. While my life wouldn't be the same without my parents, I believed I would be able to find a way with the support of my people, to live and not merely survive. I still do not want to live without my parents, but I was able to trust that I would be able to live and accept the need to be alive for my parents' well-being during their final years. Now don't get me wrong, I still hoped we all three would have died together as my parents and I have often joked about in some natural disaster - this remains my ideal. 

Dad and I never imagined though that we would lose her so soon. I tried to prepare dad for thinking ahead because of mom's rapidly declining health. I was afraid she would require a 24/7 private caregiver or nursing home placement before long. After she was treated for the EC, she had an incredible 1.5 weeks for her. She went out and did things, went to many medical appointments and was able to go do the things she wanted as long as dad drove her and helped her walk into places. And then on that Wednesday, she started feeling worse. Thursday, she cancelled her medical appointment that day. Friday she couldn't move without dad's help, she was hardly eating or drinking anything. She refused to go to the hospital. Dad never pushed mom to do anything medically she didn't want to do. She didn't seem to take it well from dad. Whereas, with me, she did. 

I came over on that Saturday morning and dad asked me to try to convince mom to go to the hospital, to the main location, and by ambulance. Mom was curled up on the couch, she probably weighed under 100 pounds at this point if it wasn't for the loose skin of her apron belly from her abdominal surgeries. She couldn't move any amount without increased pain and of course remaining still didn't alleviate her pain either. She couldn't walk by herself; she couldn't pick up her legs onto the couch herself. She couldn't really do anything by herself. Amazingly though she was able to clearly remember her medications and when to take them. Liquid dribbled out of her mouth when she tried to drink from a straw - more than I had ever seen. She could barely talk. She had difficulty enunciating and while she could kind of say sentences, they had to be short, but the words were hard to understand. These two things alone were new, alarming developments.  

When talking to mom about needing to go to the hospital, her response was "what are they going to do? Give me fluids and antibiotics?". She was exasperated and I could tell she didn't think the hospital was going to do anything more than fluids and antibiotics so what a waste. I just thought "No, mom. They're going to do so much more." I explained to her that she couldn't live much longer like she had been the last two days, she wouldn't make it through the weekend if she didn't go to the hospital. I convinced her to go by ambulance to the hospital we knew she needed to go to for the best care, where most of our doctors are. 

I had access to mom's patient portal so every time she had any test done even in the ER, I could view the results long before the ER nurses or even the doctor came to tell us. From the lab results and when the ER doctor was finally able to see us all in person, he asked the nurses why she was still there in ER in an urgent questioning manner and when he said, "She should be in ICU", I knew we were way deeper in it than any of us had realized. We never would have guessed that mom was in septic shock, her life was second to second. The ER doctor wouldn't let mom make any decisions, he said she was cognitively impaired from the sepsis. We went against mom's wishes and made her a DNR for that day and night. And through all of this, mom had some of the best hearing she had in years and would remember things being said around her and then later on ask for clarification about what we were talking about. We were astounded. But that was mom. She was always leaving us astounded and she continued to the rest of her life up until her final breath. She was alive long after she medically, scientifically should have died. She became lucid enough in the midst of everything that while I was making the medical decisions for her, I felt she was lucid enough to be involved in her care and to know what was going on, no matter how harsh the truth was. And that's how mom wanted it - she wanted to be involved in her own care and she didn't want anything kept secret from her. She furrowed her brows I was told when I would talk quietly to any hospital employee and especially if I stepped out of the room to talk to them. And she would relax and appear relieved and peaceful when I would come back and tell her what had been discussed. She even asked me that second day in the hospital, "You wouldn't lie to me, would you?" No mama. Never. She hated it when I told her we didn't know things, she was afraid that I was hiding the severity of things from her. I just didn't know because I couldn't tell the future - I knew the current risks but I didn't know what was for sure going to happen until the day I had to tell her that we were putting her on hospice. That was when we knew there was no more hope of saving her. The only thing left I could do as a caregiver was make her last days as comfortable and full of love as I possibly could. And I did just that with the help of my dad and mother-in-law. She died with me and dad by her side. Her ever-faithful daughter never leaving the hospice facility and rarely leaving her room while her ever faithful husband took care of their home and her pets for her when he wasn't at the hospice facility.

Mom had an affinity for dragonflies the last few years of her life, she liked that they're called Skeeter Hawks. As we left the hospice facility to return to our own homes respectively after saying our final goodbyes to mom's physical body - a dragonfly was caught in the grill of mom's car. I asked dad what he thought it meant.

"I caught her". 

Watch Sharing Mama's Story for a detailed account of mom's last weeks alive, including our time at the hospice facility together. 

Overreactions to Chronic Illness

I've noticed as I've re-entered the dating world following my divorce a common trend among those who may be labeled as healthy themselves and have a limited experience of chronic illness - they tend to overreact to my health symptoms. I realize this comes from a place of concern and uncertainty regarding what they should do to help me and I would prefer their concern than for them to dismiss my symptoms. But I can't help but almost laugh to myself at their overreactions all the same.

One partner asked to call an ambulance whenever I wasn't feeling well. Others regularly advised me to see a doctor or go to the ER when I'm ill. They haven't had the experience yet to trust that I know when I need to seek help and when I don't. I imagine they feel helpless as they listen and watch me suffer from my symptoms as well. Those of us with chronic illness have learned our bodies over time and we can tell when professional intervention is necessary and when we can let it slide until the next check up appointment.

For instance, I was having early symptoms of a possible intestinal blockage. My partner encouraged me to go to the doctor. I haven't had a multitude of intestinal blockages but I've had enough to know that seeking medical attention at this stage wasn't necessary as I wasn't even sure I was having an intestinal blockage yet. I was able to still function and I wasn't having any of the for certain signs of an intestinal blockage - just a concern that I could be starting to. Even if I was having an intestinal blockage, I try the various tricks recommended to try to help the intestinal blockage pass before heading to the ER.

From time to time I feel very weak and it is even difficult to walk or talk. I end up staring off into space, not responding to those around me until my energy can be restored. This would send one partner into a scare and he would threaten to call an ambulance. Anyone who knows me knows that one of the last things I want done is for an ambulance to be called for me. It has yet to be necessary and I don't want the expense of an ambulance ride to the hospital when someone could drive me to the hospital if needed. In this case I had to muster all my strength to tell my partner no to an ambulance and walk to the bedroom to rest.

My father has helped provide care to my mother for the majority of their marriage and to me for the majority of my life. He is relatively healthy but through his experiences as a caregiver, he's learned to trust my mother and myself. He acknowledges that he doesn't know exactly how we are feeling or what our tolerances are for pain and other bothersome symptoms. He's resigned himself to follow our lead - he offers assistance and helps us is whatever ways he can - and he waits for us to tell him when enough is enough and we need help obtaining medical intervention. He has told me how helpless he feels when we're ill feeling but he realizes we will let him know what kind of help we need as we know our bodies and limitations better than anyone.

If I were to call the doctor or go to the emergency room every time I felt sick, I would be calling or be there every . single . day. And unfortunately, that's how it is with a lot of us with chronic illness. We don't experience regular reprieves of bothersome symptoms. We feel ill, we are tired, and we are in pain the majority of the time. We have learned what is normal for our bodies and what is not. We have learned to live with symptoms to the best of our abilities and we can tell when those symptoms increase to the point of requiring additional medical intervention. The sad truth is that we are lucky if we have found a way to manage our symptoms for the most part. It may be too much to ask for a cure but management may be a real possibility.

What We Need From You

Chronic illness is a challenge, period. It's a challenge for those who live with the illness on a daily basis, for caregivers of the ill person, and for those who are involved with the person outside of the home. Chronic illness often leaves those in its wake feeling frustrated and helpless. The ill person struggles to live daily life with the symptoms of chronic illness and friends and family are limited on what they can do to help the ill person. To make matters worse, those of us with chronic illness are often hesitant to ask for help from others due to feeling burdensome and are frequently at a loss ourselves as to what may be helpful. To help all of us, here's a list of things we need from you due to chronic illness.

We need you to be available.
Chronic illness can be extremely isolating at times, particularly if it is a rare disease. Depending on the diagnosis, it can be difficult to identify and communicate with others with the same illness. Social media has helped close the distance among individuals with the same illness but in person visits remain different from online communications. We are further isolated due to difficulty to physically leave our homes except for our medical appointments. Even when we want to visit with others we may not physically feel up to visiting regardless of the communication form. We frequently experience hospitalizations and may only experience encounters with medical providers. Your presence in person, on the phone, or online is a tremendous support to us when we are able to do so.

We need you to listen and encourage.
Due to the elevated risk of isolation among those with chronic illness, we are at higher risk for depression. We easily become frustrated, discouraged, and depressed regarding our health issues and daily struggles. Your willingness to listen to our concerns and to encourage us along the way has an immense impact on our mental health.

We need you to be understanding and forgiving.
Changes in our health and abilities often causes us to feel angry and frustrated as we are adjusting to chronic illness. Furthermore, when we don't feel well we may be ill tempered. We don't mean to direct our frustrations and anger toward others. A gentle reminder when we are acting unfair will help us to realize any damaging behavior and allow us the chance to correct any harmful behavior. Your understanding and forgiveness is paramount in this process.

We need you to help us feel accepted and loved.
Chronic illness typically means changes to our bodies and abilities that may not be visible to others but we remain acutely aware of such changes. We may have difficulty accepting such changes and become insecure and self-conscious of our bodies, symptoms we are experiencing, abilities, and our self-worth. We all want to be accepted by others and this desire may be heightened by chronic illness. Your acceptance helps us to accept ourselves when we are struggling with self-love and acceptance.

We may need your physical assistance.
Chronic illness is high maintenance requiring ongoing medical management that includes frequent medical appointments, tests, procedures, medications and more. These tasks are demanding physically and mentally. As abilities are challenged by chronic illness, we may require your physical assistance in the form of transportation to appointments, assistance obtaining and taking medications, household chores such as cooking, shopping, and cleaning. Changes in our abilities often leaves us feeling as a burden on others resulting in our hesitancy to ask for physical assistance even when it is greatly needed.

We may need you to help us find assistance.
Chronic illness can easily create financial difficulty due to inability to work temporarily or permanently. Our finances may easily be overcome with medical expenses. Locating appropriate resources is not an easy task when one is sick. Therefore, your assistance in locating and applying for resources may be of great service to us during a time that we are having difficulty physically or mentally functioning.

We need you to help advocate.
As a patient, we benefit from advocating for ourselves but your advocacy on our behalf would also be advantageous. We may not always have the physical fortitude to speak up or we may forget questions to ask. You can help us by attending appointments with us and listening to the information presented by medical providers. Additionally, advocacy efforts on a larger scale directed toward public awareness and legislation are stronger with participation by patients and loved ones.

We need you to help us enhance our physical comfort.
Chronic illness often is exacerbated by physical symptoms that are distressing and even painful. We've learned little tricks to help ease our discomfort such as using heating pads, rubbing a painful body spot, or even taking a nap. When you are near, you can help by handing us objects such as a heating pad or our medication so that we may limit our movements, particularly when movement is painful. Sometimes a gentle rub on the afflicted body part or even something as simple as playing with our hair can be soothing. We often fight fatigue that negatively affects our sleep schedules. In such cases, helping us limit our nap time will help us maintain an appropriate sleep schedule while boosting our energy.

We need you to take care of yourself.
Lastly, we realize that providing care and comfort to a chronically ill person can be difficult on others and want your well-being to be taken care of as well. Caregiver burnout can be detrimental to all involved and the last thing we want is our illness to be harmful to you. We understand that one cannot provide around the clock care for us and maintain one's own well-being. Self-care is important for everyone, not just those with chronic illness.

We may not say it enough but all your efforts to support and assist us in the walk of chronic illness is greatly appreciated and we are far better off with you in our lives than without you. We thank you for all your efforts.