Kristen Lewis

@kristen-lewis-2 | contributor
Kristen is a self-identifying spoonie who has been diagnosed with an autoinflammatory condition. She currently lives in South Florida. IG: @healthandillness
Kristen Lewis

4 Fears I Have Because of My Chronic Illness

My chronic illness is invisible. That means you may not know anything is going on in my body when you walk by, but my body just doesn’t function properly. And my body is slowly building to attack itself month after month. This has been reality for much of my life. Cyclical illness every 30 days. Fevers. Chills. Body aches. But, the parts of being chronically ill that scare me the most are not always the symptoms or a fear of death. 1. Being a burden. I am a fiercely independent woman. I get uncomfortable having to lean too hard on someone for support. This gets truly difficult when I’m sick and I really just need to stop being silly and ask for the help I need from friends and family. One of my fears is that the time will come, sooner rather than later, when I really need to rely on others to get through the day-to-day. Now, I think it is important that we all have the support and care that we need to have our needs met on a daily basis. But, I still hold firm in unconscious belief that *I* should be able to grin and bear it. Thank goodness for therapy to help slowly make changes to this firmly held belief. 2. Having to stop working full-time. Like not wanting to feel that I am a burden, I was raised to have a tireless work ethic. I think much of this belief comes from the culture in the U.S. I notice that we equate the amount of work done to our self-worth in much of our culture. This is going to be an even more difficult pattern to break. And this is a deeply ingrained fear for me. But, when it comes right down to it, a full-time, 9-to-5 job is just not sustainable for every body. 3. The unknown. While the symptoms don’t always scare me, I do have a ridiculous amount of fear around what the next new symptom may be. Because my illness is not necessarily well-studied — or even currently named — I oscillate between coming to terms with my illness and fearing that the next shoe will drop at any moment. 4. FOMO. The fear of missing out is alive and well in this household. Missing out on a “normal” life is definitely towards the top of my list of fears. I spend so much time stressing about missing out on current activities, future events and possibilities that I make myself sick. I am currently learning to let go and take the positive things that come my way. This list is all to say that my chronic illness is truly a journey. My body is going through many different things on the day-to-day; but my mental health is so important in my treatment plan. Therapy, quiet moments, baking and socializing are all self-care methods I use to keep myself in a good place mentally. Oh — and anti-anxiety medication. We can’t forget the most important tool in my mental health toolkit.

Kristen Lewis

PFAPA: Feeling Isolated and Finding Community With Invisible Illness

While I have dealt with my chronic illness my whole life, I have only recently been diagnosed as having an illness. I grew up with a mother who had a chronic illness that was invisible, yet relentless in causing her pain. So, I have never really doubted anyone else who has struggled with an invisible illness. But, I find it funny that neither my family nor my doctors ever thought I could have my own invisible illness. It is no one’s “fault” that I was only diagnosed at 25 years old. It is just how it happened. But, in adulthood, I champion my own mother for being a strong influence on my own stance on caring for myself after my diagnosis.   Now, while I have been diagnosed as having a chronic illness, that doesn’t mean they have narrowed down exactly what that illness is. I have been lumped into the group of autoinflammatory illnesses and pegged as having something similar to PFAPA (periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis), a syndrome seen in children. At 29 years old, I like to joke that I have never fully grown up. My illness, in general, is invisible. I get sick once a month and it usually manifests like the flu or another cold with a fever and inflammation. I am sure so many of us with invisible illnesses have had the experience of being made to feel like we are just lying to ourselves about the situation. I have been told many times I must be a hypochondriac and I am making things up about my health. But, blood tests don’t lie. And some part of me wishes I could in some way prove my illness exists to everyone who slings those doubtful words my way. My experience of having an invisible illness has felt so isolating at times. My condition means I am not always sick and sometimes I am just fatigued or even feel completely fine, depending on the day. I have been lucky to connect with a few friends and coworkers who also struggle with invisible illnesses. This connection has been an incredible lifesaver for me, along with websites of community like The Mighty. Having an invisible illness is the hardest for me in a work environment. I fall into the category of being chronically ill, but still able to work. I feel lucky in that respect. But, for those of you who also fit into that category, I think there can be some challenges in the office environment. I have been so lucky to have worked for some truly excellent and compassionate companies over the years. And I have been so thankful for the Family Medical Leave Act (FMLA). But, simultaneously, I have felt some pressure in the workplace to never be out sick and always give 200 percent, working late nights and giving my whole self to a job. But, I think it boils down to knowing your limitations. For me, I know an increase in stress, lack of sleep or lack of healthy meals will lead me to being knocked off my feet. I will be no good to anyone once I pass a certain point and self-care is incredibly important, especially to someone with a chronic condition. Having an invisible illness has, at times, made it difficult to relay my limitations to my coworkers. In certain instances, I have shared the fact that I have a chronic illness with coworkers and have had varying reactions. The ones that sting the most are those who do not believe it and push back. Those who are supportive are amazing. But, those who have doubts tend to make the workplace seem isolating. I wish I had wise words to share on how to make these situations better. I cannot say I am an expert on workplace politics and I truly believe each situation is different. I also believe that having an invisible illness does not have to be a negative in a workplace environment. Now, I am a social worker. I have a strange knack for empathy and love to make connections wherever I go. But, when all else fails, I can remember I have my own community of people to fall back on here at The Mighty or through my online support group. To all those who feel isolated by their invisible illness, remember there are many online communities available to connect. And if all else fails, you are more than welcome to get in touch with me. I may not be the coolest spoonie around, but I think I am pretty OK company. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Siri Stafford.

Choosing Between Job and Health With Endometriosis

With the rising cost of health care and the cost of living in general, it’s nearly impossible for a middle class person not to work. For people like me who have a chronic illness, the cost of living and health care are even more expensive, and trying to hold down a job can seem impossible at times, too. I have endometriosis, which is a condition where tissue similar to the lining of the uterus is found outside the uterus, possibly attaching to organs in the abdomen. It can cause heavy periods, painful cramps and infertility. I also have ovarian cysts which eventually rupture instead of resolving on their own. While endometriosis and ovarian cysts are common, there is no cure for either, which classifies both as chronic conditions. Nearly 117 million people in the U.S. have a chronic illness. That makes up nearly half of the U.S. adult population. If so many people have a chronic illness, then why are those who are sick constantly forced to choose between their job and their health? Job vs. Health: Which Is More Important? Living with this condition (or any chronic illness, for that matter) makes holding down a job difficult. I have been out of college for a year and working full-time while simultaneously battling the worsening of my condition. Some days I can’t eat or even get out of bed because of the pain and nausea. But, that event I need to go to or that client I have to meet can’t always accommodate my illness. Regularly coming in late or leaving early because of doctor’s appointments doesn’t look good either. More often than not, chronically ill people are faced with the decision to either take care of themselves or keep their jobs. Of course, there are laws that protect disabled individuals. But, not all workplaces are required to give you paid time off, sick leave, etc. With some companies, if you aren’t at work, you don’t get paid, and if you don’t show up for a lot of your shifts, then you can get fired. Getting and Maintaining a Job Many companies ask you to fill out a voluntary disability self-identification form when applying for a job. The first paragraph of the form might say: Because we do business with the government, we must reach out to, hire, and provide equal opportunity to qualified people with disabilities. To help us measure how well we are doing, we are asking you to tell us if you have a disability or if you ever had a disability. Completing this form is voluntary, but we hope that you will choose to fill it out. If you are applying for a job, any answer you give will be kept private and will not be used against you in any way. When I started my job search I felt compelled to disclose my illness on this form, but after about two months, I noticed I wasn’t getting any responses from the multiple positions I applied for. The next round of applications I sent out, I either did not fill out the form or said I did not have a disability, and I started getting responses from potential employers. Is it just a coincidence? I really don’t think it is. The bad news is, there’s nothing you can do if you are disqualified from a position because of your illness. There’s usually no way to prove that you were disqualified because of your disability, because the employer can say you were not a good fit for the position or not qualified for it. Because of this, many chronically ill people lie on this form and try to hide their illness. You are not legally required to tell your employer about your health problems, especially during the interview process. But once you are hired and notice that it may affect your work, it might be a good idea to say something. “I’m OK.” The problem with a lot of chronic illnesses is that they are “invisible,” meaning you can’t see the illness on the outside. Since a lot of these illnesses are invisible, people who are sick may feel the need to hide their illness. “I’m OK” is probably a chronically ill person’s favorite phrase. A person with a chronic condition could be smiling and laughing on the outside but feel like absolute hell on the inside. But we may not want to draw attention to our illness, so we hide it behind smiles and “I’m OK”s. Another problem with these invisible diseases is that people often think we are faking it. When most people think of someone who is “chronically ill,” they think of a patient with cancer who has lost their hair from chemotherapy or a person in a wheelchair. They don’t usually think of someone who looks well and gets up and goes to work every day. Unfortunately for most people, seeing is believing; if they can’t see it, they don’t believe it. I was transparent with my previous employer about my condition, and many times after a doctor’s appointment or a sick day I was told to “grin and bear it” and try to make it into work. I looked OK on the outside, so my supervisor couldn’t understand that my insides felt like they were being torn apart and that it was all I could do to get out of bed. Again, in these situations, we are forced to choose between our health and our career. Work Hard, Fight Harder Unfortunately, those of us with chronic illnesses may have to work harder than those without. On top of working a job full-time, we are fighting our disease full-time, too. Having a chronic illness is its own full-time job, and in most cases, it comes with overtime. In our careers we will have to work harder to do good work and prove that we are able, even though on a government form it says we are disabled. Work hard at your job and fight your disease even harder. But remember to take care of yourself. In my opinion, at the end of the day, your health is more important than a paycheck. So when it comes to choosing between a job and your health, I recommend choosing your health. Jobs will come and go, but you only get one life. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Purestock

Erin Migdol

Clothing Brands For People With Chronic Pain

During a pain flare, feeling anything touch your body can be excruciating. On those days, you’ll likely reach for soft, comfortable clothes that don’t add to your pain. Hello leggings, goodbye tailored pants. While you could just throw on an old T-shirt, wearing something that’s fashionable and comfortable can help boost your mood and make you feel more confident if you have to run out to the pharmacy or go to work. Luckily, there are many brands out there that offer a variety of comfortable and fashionable options. We asked The Mighty community which clothing brands they recommend that are comfortable for people with chronic pain. Here are their recommendations. 1. LuLaRoe LuLaRoe bills itself as “where fashion meets comfort,” and indeed, the company offers a selection of loose-fitting tops and T-shirts, stretch-knit dresses, A-line skirts and leggings (their most popular item). Unlike many clothing collections designed for comfort, these pieces come in a variety of vibrant colors and patterns. A pair of leggings usually retails for $25. “In the past few weeks, I’ve been buying more and more LuLaRoe clothing,” Samantha Carter told The Mighty. “The leggings provide support that isn’t constricting when I’m dealing with an interstitial cystitis flare or muscle spasms relating to other pelvic issues, and the tops and dresses are loose and flowy, so they don’t irritate my skin when my nerves start going bonkers from my fibromyalgia and complex regional pain syndrome — even when everything else I wear feels like it’s constantly scratching a sunburn I don’t really have.” LuLaRoe is only sold through independent consultants. Check out the collection and find a retailer here. 2. Hanes A bad pain day sometimes means all you can tolerate is the basics — T-shirt, underwear, and maybe leggings or sweatpants. Hanes offers wardrobe staples in soft and comfortable cotton and jersey. As an added bonus, many of their shirts are tagless. Most items cost between $3.99 and $20. Buy the tagless shirt above for $11.99. 3. Motherhood Maternity Not all women like the idea of wearing maternity clothes when they’re not pregnant (especially those struggling with infertility). But if you’re OK with it, maternity clothes can provide comfort to those dealing with chronic pain, weight fluctuations, skin sensitivity and bloating. Motherhood Maternity offers tunic tops (retailing for around $30), maxi skirts ($35) and jeans with stretch waistbands ($50). “Motherhood Maternity Secret Fit Belly Jeans. I started wearing them during pregnancy and still love them because they don’t bother my back, actually the belly band puts slight pressure on my lower back which helps ease some pain,” Kristina Bentle told The Mighty. “Plus I love that they help with my hypersensitivity, they don’t dig into you like normal jeans. And I’m not running around in leggings 24/7.” Buy the skirt above for $34.98. 4. Skechers For the days when you’re able to put on a pair of shoes, you’ll likely want a brand that offers support but doesn’t constrain any part of your foot. “[Skechers] is the only brand that doesn’t pinch my Achilles’ tendon or put shock into my kneecaps,” Jaime Robeson told The Mighty. Most pairs retail for around $50 to $70. Buy the shoes above for $44.95. 5. And1 And1 is a men’s athletic brand that offers basketball shoes, shorts, sweatpants and hoodies. Just because it’s a men’s brand doesn’t mean women can’t wear it, too. “I can buy oversized sweatpants, hoodies, shirts. Really cozy and keep me warm when I’m super cold,” Nicole Tyrrell shared. Most items retail for around $10 to $20. Buy the sweatshirt above for $19.49. 6. Torrid Torrid features funky, trendy styles up to a size 30. Their leggings come in a variety of fun prints, including Disney and Harry Potter, and most of their tops and dresses feature a loose fit. Leggings cost about $25 to $30, dresses go for about $60, and tops are about $28 to $50. “Yes, I am bigger, but not all Torrid’s line is large. They are edgy which is nice for me, they have leggings like LuLaRoe in funky colors and schemes. Pair the two and I feel comfortable and punk again,” Rebecca Stormcrowe said. Buy the leggings above for $26.90. 7. Old Navy Old Navy combines classic items like T-shirts and jeans with natural fabrics and forgiving cuts. Most items come in a rainbow of colors and low prices (most pieces are less than $50, with some shirts as low as $6). “I shop a lot at Old Navy because so many of their clothes are cotton. Cotton and rayon are my go-to’s.” Amanda Coleman said. Buy the shirt above for $12.99. 8. Victoria’s Secret PINK PINK is Victoria’s Secret’s apparel collection and offers sweatshirts, leggings, sweatpants and shorts with stretchy waistbands, as well as oversized shirts and tanks in feminine prints and colors. Most items sell for between $30 and $60. “ I wear a lot of PINK clothing as it can be very loose and soft,” Kerri Donchez told The Mighty. Buy the pants above for $56.50. 9. Chico’s Chico’s blouses and dresses could easily be worn to work or out running errands on the days you’re able to leave home. Nancy Lea Martine Koontz gave The Mighty a tip and recommended shoppers go up a size since Chico’s sizing system is “weird.” “The clothing is comfy, and even ordering a size larger still fits well, and isn’t uncomfortable as far as bottoms and tops go. They are a little pricey, however, you can get an app, Poshmark, that is a wonderful site that sells many name brand clothing at a discount (it’s kind of like an online consignment store),” Koontz said. Buy the cardigan above for $49.99. 10. Yours Yours offers a huge selection of everything from wraps to tunic dresses to knitwear, all in sizes 16 to 36. The styles are ideal for those who prefer looser clothing over more structured pieces. Dresses range from $20 to $100, blouses from $30 to $40 and pants around $30. “Lots of roomy long T-shirts and batwing tops, jeggings. I don’t feel comfortable in clingy, tight-fitting clothes,” Libby Listens Bassnett told The Mighty. Buy the dress above for $47. Have a clothing brand you’d recommend? Let us know in the comments below.