Chronic Illness Warriors with a Business

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My daughter has a rare disease, short bowel syndrome. She’s had a really tough, tumultuous, start to her life and her journey thus far has been incredible. She was born 14 weeks early, weighing only 1lb 8oz, she spent more months in the hospital her first 2 years of life than home, she’s had 12 surgeries, had a central line until she was 3 years old, and still has a feeding tube. She has been in early intervention for everything and is the hardest working 3.5 year old I know! She is an incredible human (#notbiased) who I know is going to do great things.

By sharing our story on social media I’ve had that chance to connect with many adults who are also living with a chronic illness. Some of these incredible warriors are not only climbing mountains daily but also running a business! I love connecting with women similar to my daughter that she can look up to. I was honored to have the chance to try their products and learn about some of the hardships as well as some of the benefits of owning a business AND having a chronic illness. These businesses are all offering discount codes for She Got Guts so start shopping!! I want Adeline to know, people just like me can do amazing things.

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The Salty Artisan

I am so honored to have connected with Megan via social media and she is a total inspiration to our family. She turned something that is viewed as an inconvenience, time consuming, and difficult into something beautiful that gives back to her community. During her 1.5 hours a day of treatments for her chronic illness, she has created a business that gives back. Since September 2017, Megan has raised $28,000 through her fundraising efforts. In addition, she was also the main speaker at an Harvest of Hope event this fall that raised over $115,000. 

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About Your Business

I have Cystic Fibrosis, which means I have 1-1.5 hours a day attached to my vest and doing treatments. A few years back, I decided to put this time to use, by hand-making bracelets during my (otherwise wasted) therapy time and giving the proceeds of the donations to the Cystic Fibrosis Foundation.

Chronic Illness

I was diagnosed with Cystic Fibrosis at 5 years old. Every day since then has involved digestive enzymes, nebulizers and my vest. I have stayed very active throughout my life, and it has definitely paid off. I didn't have my first hospital stay until I was 26. Since then, its been a tough road this past year and a half. I have spent 3 months on IVs, and started multiple antibiotics for the treatment of the MAC (mycobacterium avium complex) in my lungs.

Challenges of Owning a Business While Having Chronic Illness

For me, it is balancing my full-time job with my volunteer and charity effort. Some days I am tired, and it is hard to motivate myself to do anything more involved with CF than I already have to do. But, I do know that the only way a cure will be found is by spreading awareness and getting donations, which makes it all worth it in the end.

Benefits of Being A Warrior with a Business

It has helped my treatment time have a purpose. I no longer feel like this time is wasted, or I am being forced to do my treatments. It gets me excited to do my vest, and also gives me a creative outlet to start and end my day.

Find what you’re passionate about, and find a way to make an impact: through your voice, through your creativity, through your illness.
— Megan, Owner of The Salty Artisan

Kathleen is a total inspiration and Adeline has been wearing her HOPE Apparel for a few years now. Personally, I love how her designs look like something I would typically chose for Addie, yet they are specific to her as well with fun sayings about being a tubie or inspirational messages about being a fighter. We love an inspirational t-shirt and she hits the nail on the head with her designs. She has so many challenges in her daily life, yet is a total inspiration and advocate for the CI community.

About Your Business

When I got diagnosed with my rare genetic disease many years ago, my family and I were on the look out for awareness gear however we couldn't find anything we liked! We searched far and wide but there was nothing to our taste. That's when my mom and I decided to start HOPE Apparel in 2015. The goal with our business was to create awareness apparel for various illnesses that had classy and aesthetically pleasing designs - wanting them to look like graphic tees you can get at any clothing store but with a message of hope. Spreading awareness is so important to use because with awareness comes hope, hope for more adequate treatment and eventually a cure. Throughout my life, before illness and after, art has always been a common dominator in my life so being able to use my interests and talents to make a difference means the world to me. As you've probably notice, "hope" is a popular word around here leading to the name Hope Apparel.

Chronic Illness

5 Chronic Illness Warriors with a Business- She Got Guts

I have a genetic connective tissue disease called Ehlers-Danlos Syndrome. EDS affects the collagen in your body, the glue that holds our bodies together. Because of the defect in my collagen, my skin, muscles, tendons, organs, blood vessels, etc. are more stretchy than normal, affecting my body systemically. My body doesn't have the support it needs to support itself. This means that I experience dislocations everyday because my ligaments can't support my joints/chronic pain, my digestive tract is paralyzed because my organs don't have the proper support, and I have problems with my autonomic nervous system, my blood vessels, as well as experiencing issues with mast cell disease. Though I was born with my disease, I was only diagnosed in my late teens when my symptoms that were fairly mild growing up becoming severe and disabling, leading us to seek out answers on what was going on with my body. Since getting diagnosed with EDS, I have gathered many other diagnoses all caused by the genetic syndrome itself. I now use a wheelchair full-time, have a hickman line for TPN, and separate G and J feeding tubes to compensate for my bodies dysfunctions. I also have a standard poodle service dog in training named River who is learning tasks to help me manage my illness and become more independent.

Challenges of Owning a Business While Having Chronic Illness

The hardest thing about owning a business and having a chronic illness is the unpredictability. If there's one things that is predictable about complex illness is that life is completely unpredictable. Sometimes flares happen or I get sick and land in the hospital, making it hard to have the energy to work on the shop. I also deal with a lot of brain fog so I make sure to triple check every order before I submit it to avoid as many mistakes as I can.

When I went from being functioning in life, going to school and doing a million other side projects, to becoming disabled, I lost a lot in my life. I lost so many things from my university career to friends, to dreams for the future. Everything changed.

Benefits of Being A Warrior with a Business

5 Chronic Illness Warriors with a Business- She Got Guts

Working on this business venture with my mom has been a blessing in so many ways! When I went from being functioning in life, going to school and doing a million other side projects, to becoming disabled, I lost a lot in my life. I lost so many things from my university career, to friends, to dreams for the future. Everything changed. Being the driven person I've always been, working on this business with my mom has allowed me to feel a purpose in my life; I feel passionate about spreading awareness and being able to combine that with my love of art has left me feeling very fulfilled. We all need something that gets us out of bed in the morning and, when you're sick, it can be harder to feel that fire but this business helps keep me going. It has given me the opportunity to grow as a person, as a business owner, as an advocate for people with disabilities and invisible illnesses, and as an artist. It has also allowed me to connect with some of the most amazing people through my work. I've been able find people who share the same illnesses as I do that I may not have met in real life. I've learned so much through all these people I've met and hearing their stories. Though my designs originated from my personal experiences, my line of t-shirts is now much more diverse including many conditions I learned about from customers of my shop.

Advice for Others with CI Who Want to Start a Business

My advice for someone who would want to start a business with chronic illness is to find something that lights your fire, that you're passionate about, and go for it. Sometimes when you don't feel well, it's especially hard to motivate yourself to do things you don't enjoy doing. If you find something you really enjoy, doing it everyday won't feel much like a chore and it'll be easier to motivate yourself to do it. You may have to adapt things with the way you run your business to suite your lifestyle with chronic illness but that's okay, there's lots of ways you can do it! My business allows me to have a flexible schedule and to be more hands off since I sell customized products through a printer that does drop shipping. You may need to work different hours that people normally would or work from bed but it's not important how you do it, it's just important to do it if you're passionate about it. I would also recommend, if possible, to have someone working with you to an extent. That way, when you're really unwell, you have someone to lean on, who can do some of the less fun stuff, or can just overall give you a hand. It's nice to have someone to rely on when you're down and out.

Throughout my life, before illness and after, art has always been a common dominator in my life so being able to use my interests and talents to make a difference means the world to me.

Brave Soul Blankets

About Your Business

Brave Soul Blankets was founded in January 2017 by Melaney Niemiec, who had a desire to bring joy and comfort to adults with life-altering illnesses. Brave Soul Inc. is a 501c3 nonprofit organization that creates handmade blankets for adults ages 18-40 years old battling life-altering illnesses within the United States & Canada. Brave Soul Blankets are provided free of charge to accepted nominated recipients, personalized from quality fabric, prewashed in organic detergent and professionally packaged to provide a “comfort in a snuggle.” Brave Soul Blankets is supported by help of others through donations, sponsorship, and funding from our Etsy Shop. Our biggest financial support is from our Etsy Shop, where people from all over the world purchase items in support of Brave Soul. It is very humbling to have grown from a small charity that simply started with a few dollars in my wallet to impacting individuals worldwide!

As time went on, Melaney realized how much a simple blanket could brighten a person’s day. Having a gift specifically chosen and delivered on a difficult day can help so many to feel loved, supported and becomes part of the journey. Finding there are many gift programs for children with life-altering illnesses but not adults, Melaney decided to start one for a population like herself, ages 18-40 years old. This nonprofit is her way of spreading love to others in need and giving back to the community who has helped her in times of need.

Chronic Illness

The inspiration behind Brave Soul Blankets came from Melaney’s own battle with life-altering chronic illnesses. In February 2016 at 22-years-old, while working as a pediatric neuro-trauma nurse with a passion for Crossfit & hiking, Melaney became very ill. After spending 32-days in the hospital, Melaney was diagnosed with several incurable illnesses. Since the initial diagnosis of Dysautonomia (POTS), Melaney has also been diagnosed with Cystic Fibrosis, Mitochondrial Disease, Global Digestive Tract Paralysis (including feeding tube-dependent Gastroparesis and Ileostomy), Mast Cell Activation Disorder and other comorbidities. Much time has been spent in the hospital, infusion clinics, or appointments. Having a personal cozy blanket from home had become a source of comfort and support.

Chronic Illness comes in many forms and challenges. My challenges are Cystic Fibrosis, Dysautonomia (POTS), Mitochondrial Disease, Global Digestive Tract Paralysis (including feeding tube-dependent Gastroparesis and Ileostomy), Mast Cell Activation Disorder and other comorbidities. It has been difficult adjusting my mindset from nurse to patient, being the one with medical appliances (various central lines, feeding tubes, Ileostomy, etc.), relearning how to walk in my early-20's, and losing my independence so quickly. These are exhausting, life-altering illnesses that change the way a person thinks about everyday things. It encouraged me to find a blessing in each day while trying to live life to its fullest whatever that may be on a particular day. My joy has always been in giving back to the communities who have impacted my life, and Brave Soul Blankets provides that opportunity.

Challenges of Owning a Business While Having Chronic Illness

Some of the challenges in owning a business has been maintaining clarity of thought and meeting deadlines. Chronic Illness can be incredibly draining - physically, mentally, and emotionally. Some days it takes everything I have to get out of bed, to answer an email, to cut a piece of fabric, and get the motivation to complete an order. There are times when I physically have nothing left to give. However, there are days when I need Brave Soul and take those moments to just zone out and focus my energy on the Mission and helping others. Hospitalizations can really cause issues; they can be unexpected and long. But supporters of Brave Soul Blankets have always been so incredibly understanding and not a day goes by where I don’t appreciate each and every person who has helped make my dream of helping those in need come into fruition. However, owning a business forces me to want to find a way to accomplish those things that need to be done while giving me purpose. Knowing I can offer comfort, care and encouragement wrapped in a blanket to someone going through a challenging time is a very powerful motivator.

5 Chronic Illness Warriors with a Business- She Got Guts

Benefits of Being A Warrior with a Business

Owning a business/501c3 nonprofit organization forces me to find a way to accomplish tasks and meet deadlines while providing purpose. It gives me a reason to get out of bed. It provides opportunities to connect with people all over the world, whether companies & organizations, influencers, medical professionals, patients, and customers. There are so many beautiful parts to Brave Soul Blankets - from reading the nominations, creating personalized blankets, sending product out knowing a little bit of that person’s story, and seeing photos of them wrapped up in their blankets! The JOY I feel when seeing someone with a product I created, whether purchased from our Etsy Shop or part of our donation program, never grows old and gives me even more motivation to keep moving forward to impact more lives.

These are exhausting, life-altering illnesses that change the way a person thinks about everyday things. It encouraged me to find a blessing in each day while trying to live life to its fullest whatever that may be on a particular day.

Advice for Others with CI Who Want to Start a Business

Dream big, but start small. Make realistic goals and don’t feel bad if you need to ask for help and take breaks along the way. Pace yourself. Write everything down even if it is only bullet points or send yourself a text. Make to-do lists. My important thoughts and ideas come to me between 10pm-4am, so I always have a notepad and pen nearby because if I don’t write things down I most definitely will forget by morning. When you are not feeling well or tired it is easy to forget what you were thinking about. Then you end up not being able to sleep because you know there was something you thought of but do not have the mental clarity to remember. Don’t be afraid to ask for advice if you feel things aren’t going where you had hoped. And finally, its ok to do just one thing at a time. It is easy for everyone to get overwhelmed; add in Chronic Illness and things get 10x more complicated. In all honesty, multi-tasking is not all it’s cracked up to be.

Dream big, but start small.

Chronic Illness Warriors with a Business - She Got Guts

Sustainable Spoonie

Blythe Neer is not just an average 21 year old. She is a blogger and a business owner with multiple chronic illlnesses. My favorite part about working with Blythe was the custom items she was able to make for our family. Last year, we lost our 17 year old cat Stinker and my daughter still talks about him all the time. She was able to create a custom Stinker keychain for Adeline with a purple preemie ribbon, it’s truly treasured. She also created the most adorable family modeled after us, another item that Adeline loves. Also, every order from my shop donates a spoon to a chronic illness non-profit in need. Check out her blog here.

When I was first diagnosed, I found a lack of positivity and hope in the chronic illness community. My goal in writing is to create a resource library full of easy changes anyone can make to create fulfilling, sustainable lives no matter their chronic illness.
— Blythe Neer, Owner of Sustainable Spoonie
5 Chronic Illness Warriors with a Business- She Got Guts

About Your Business

My business is a small, handmade gift shop for spoonies. I create charms, keychains, necklaces, and other gifts out of spoons and polymer clay for chronic illness awareness. Since I have chronic illnesses that limit my ability to create, I make my products ahead of time and list them when complete. My shop is never very full because my hands can't quite keep up with demand, but I always have a few listings available at all times. Each month, I have a certain amount of custom order slots for you to work with me to design a unique, one-of-a-kind creation.

Chronic Illness

I have Celiac Disease, Ehlers Danlos Syndrome and comorbidities, and small fiber and autonomic neuropathies. I find my Celiac and Ehlers Danlos to be manageable with lifestyle changes, but my neuropathies are fairly disabling. However, I've found a lot of ways to manage them all, and I love the opportunities these things have given me.

5 Chronic Illness Warriors with a Business- She Got Guts

Challenges of Owning a Business While Having Chronic Illness

The hardest thing about owning a business with chronic illness is pacing. I get so excited about new ideas that I just want to create all the time, but my chronic illnesses don't allow that. If I push too hard, I have to rest for days, but if I pace myself right, I can create more consistently. I've had to learn that what other businesses do is not going to work for me, and I shouldn't compare my business to theirs.

Benefits of Being A Warrior with a Business

Owning a business has given me a purpose while I'm stuck at home out of school and work. It gives me something to think about other than doctors and symptoms and tests, and it gives me something to talk about with my friends and family that is not illness related! It has also taught me a lot of new skills that I don't think I would've learned otherwise, and it's allowed me to meet lots of awesome people!

Advice for Other CI Warriors Who Want to Start a Business

Take it slow! Find something you really enjoy doing and start with small steps. Have a lot of fun with social media, and don't let it become something that stresses you out. Give yourself lots of time to rest, and make sure to give yourself consistent time off to keep your creativity strong.

Owning a business has given me a purpose while I’m stuck at home out of school and work. It gives me something to think about other than doctors and symptoms and tests, and it gives me something to talk about with my friends and family that is not illness related!

Little Boo & Co.

We have been wearing and supporting Little Boo & Co. since Adeline was 6 months old. We adore this business because it’s Maine and handmade, mostly organic pieces in the world softest material.  I have a pair of sweats for myself and I wear them at least 3 times a week.  Simple, clean, modern and comfortable.  We love this brand!

About Your Business

I make handmade comfortable play clothes. Everything is handmade by me, tested and lived in by my boys and created to be a basic staple in your littles wardrobe.

Chronic Illness

I have Crohns disease, permanent ileostomy in 2016 and I am currently in remission.

Challenges of Owning a Business While Having Chronic Illness

The balancing act that is work vs. family/health. I’d love to be able to pour more of myself into creating these kids pieces but having two boys under four home with me full time, it can make things a little challenging. I wouldn’t change the path that got me to where I am today, it’s made me so strong. Making sure I keep in mind my health needs to be in check to be able to care for my family and run my creative outlet business is something I’m always working on.

Benefits of Being A Warrior with a Business

I never thought I’d own this business to be honest. I went to school for social work, my degree is in social work, I had and still do have a passion for it. I was diagnosed at 16, it’s sort morphed into part of whom I am, always dealing with some sort of medical need. I had a severe flare in 2015 that I tried to manage myself and the demands of work really got to me, stress is my trigger and it was the worst shape I’d been in thus far. When I was released from the hospital I needed time to heal physically and mentally, especially for my young son. Sewing was just what I needed and really gave me an outlet with all the changes I’d gone through. I began to sew and create and it felt right, it was therapeutic. The path that led me to where I am now was one full of bumps and turns but made me who I am. Has given me so much creative outlet and been such great therapy. Sewing has helped me heal during such a pivotal change in my life, having this business kept me sane, kept me motivated to get better, stay healthy and create.

Advice for Other CI Warriors Who Want to Start a Business

You can do it. It sounds so cliche but it’s so true. You’ve done hard things, you’ve been challenged in ways most haven’t, you’re still here, you’re still breathing, you. Can. Do. It. Those obstacles you’ve overcome and continue to overcome give you strength some dream of, give you the strength you need to be the ‘one woman show’ so to speak, to take a leap of faith in the universe and more importantly yourself. Life is too short to say, well what if? What if I’d done that? What if I’d just given it a try? You’ve been through so much, you deserve the shot to try. More importantly, with everything you’re overcoming, you deserve to succeed. It may not be easy, but you can do hard thing, you’ve already proven that.

You’ve done hard things, you’ve been challenged in ways most haven’t, you’re still here, you’re still breathing, you. Can. Do. It.
— Marisa Laskey, Owner of Little Bo & Co.