Style Tips for the Chronically Ill

I want to share some practical style tips for looking good, even when you feel less than your best. Being sick can be difficult and exhausting. For most people, illness means messy hair, ratty sweatpants, and an overall feeling of yuckiness. After all, when we feel terrible, it’s tough to even consider putting our limited energy into showering or getting dressed in “real clothes.”

But in my journey with chronic illness, I’ve found that my self-esteem takes a dip when I look the way I feel. There is not a day that goes by that I feel 100%. Sometimes I daydream about what I would do if I had 24 hours of feeling “normal” again. But I don’t want to look as pale, bone-tired and discouraged as I feel. So I made the decision to change my routine and put some effort into my appearance again. Yes, there are some days I spend in my pajamas, but that’s not typical for me anymore. I almost always shower, fix my hair, and put together an outfit. I don’t do it to impress anyone or to live up to a particular beauty standard; I do it because it helps me feel more human. When I like the way I look, it’s easier for me to engage in the day and feel motivated to do the best I can with what I’ve been given.

IMG_20150128_144354

Style Tips for the Chronically Ill

  • Choose functional clothing. You can look and feel good while still considering your needs. Embrace your personal style and get creative! For example, if you are overly sensitive to certain textures or fabrics, don’t buy them. You’ll look and feel much better in clothing that makes your life better, not more complicated. I wear pants with loose, elastic waist bands most of the time because jeans are not comfortable for me. I’ve taken the time to find fun, printed pants for myself, similar to theseIMG_20150114_150605
  • Wear layers. Symptoms aren’t always predictable, and neither is the weather. I suggest being prepared by incorporating the use of layers into your wardrobe. I often wear a fleece jacket, cardigan, or loose sweater over a tank top or blouse because my body doesn’t regulate temperature very well. Sometimes I even wear long johns under my pants! Since I can go from sweating to freezing in a matter of minutes, I keep that in mind when I choose my clothing. I tend to wear solid colored outer layers that I can easily mix and match them with my tops, which allows me to have more outfit combinations to choose from.
  • Wear clothing that doesn’t wrinkle easily. Let’s be honest, ironing is a time-consuming chore and it requires a good deal of energy. Those of us with chronic illness have to carefully plan what we do, and eliminating certain chores makes life easier. When you’re looking for new clothing, look at the tag that outlines how to care for the item. If it requires dry cleaning, regular ironing, or special washing, consider putting it back on the rack. If you fall in love with the item, invest in a clothing steamer, or at least some Downy Wrinkle Releaser Spray. In my opinion, a clothing steamer makes it easier to target and eliminate clothing wrinkles instead of ironing the entire item. And Downy Wrinkle Releaser Spray gets out set-in wrinkles like a charm! IMG_20150201_162752
  • Liven things up with accessories. When I want to add something special to an outfit, I put on a scarf, nail polish, statement jewelry, or some other touch of color. I instantly feel a bit happier when I do it. I promise that the little bit of extra effort goes a long way in feeling brighter and more put-together. Also think about adding some bright colors to your surroundings, especially if you spend a lot of time at home.

Living with chronic illness is difficult; there’s no sugar-coating it. But taking some time each day to focus on yourself helps you feel a bit better and more in-control of your day. And I think that makes a big difference!

(To read about 10 Must-Haves for Living with Chronic Illness, click here.)

Do Something Good

TV stock photo

My heart breaks every time I learn about injustice. I am a deeply empathetic person– it’s just the way I am wired. I can see that people all over the country are experiencing pain and feeling misunderstood. There is a lot of hurt these days, and it seems to keep spreading. As I’ve watched the news this week, I’ve felt moved to make a difference, so I’ve been thinking about what I can do to bring positive change in my community. I’ll have to be creative, since my illness causes me to spend a lot of time at home, but I am determined to bring a bit of light into the darkness we face.

I don’t understand why people think that hostility and hatred will bring change. It won’t bring understanding or grace; all it can bring is more hurt. When I watch the news and listen to the people around me, I don’t think we need any more pain. We need kindness, we need forgiveness, and we need to feel heard. We need to know we’re not alone, even when things get messy. Deep down, we have a lot in common.

I know that injustice, racism, and inequality are complex issues, and I still have a lot of learning to do. In the meantime, I’d like to offer a few ideas for bringing hope into our communities.

  • Focus on listening to others. Instead of spending your time thinking about the “perfect response” during a conversation, listen to the other person. You’ll be surprised what you learn when you take the time to focus on someone else’s need to be heard.
  • Look for volunteer opportunities. If you want to make a difference in your community, you may need to do some groundwork. Most charities and community organizations are stretched pretty thin, so they don’t have a lot of time for recruitment. If you care about people experiencing poverty, look into the food pantries in your area. Consider donating food to them every month or set up a time to talk with the director about helping distribute food. If you want to help children, see if there is a chapter of Big Brothers Big Sisters nearby. You need to add your volunteer work to your schedule so that it becomes a part of your life. Otherwise, it’s easy to put it off.
  • Get to know your neighbors. These days, we often connect online, and we sometimes forget about the people who live next door. It can be a bit awkward to say hello to someone for the first time, but most people will say hello in return. Think about baking some Christmas cookies as a friendly gesture– it’s a great way to break the ice. This time of year can be tough, so think about ways to be kind to the people who live nearby.
  • Collect items for a worthy cause. Hygiene items are in high demand for people with little or no income. Consider collecting toiletries from friends and family to donate to a local charity. Or put together baskets of feminine care products, hair brushes, lotion, hair spray, etc. for a domestic violence shelter. Socks are also a much-needed item at shelters. Ask loved ones to give a pack of new socks with your holiday gift and then bring the collection to local homeless shelter. You can also call specific organizations to see what they need most so that your collection can be especially helpful.

I encourage you to set aside time this week to do something positive for someone else.

Be the change you wish to see in the world. -Gandhi

Quiet Strength

PhotoGrid_1416776462437

My favorite television shows include passionate, strong female characters. I enjoy watching the shows because they convey that women can accomplish pretty much anything. And I love that. Oftentimes, the characters barrel into a room during a crisis and boldly tell other people why their cause is important. These women solve problems with their strong convictions and unwavering determination. When I watch these shows, I imagine myself as one of the heroines. I want to solve injustices as quickly as these women, even though I know most problems worth solving take much more than just a passionate speech.

For years, I wished to become someone I would consider courageous. I wanted to be able to convey my convictions by using my words. I hoped that I could get respect by following the formula for strength that I’d seen in television shows. But over the past few weeks, I’ve had a revelation: There is more than one way to be strong, and words alone rarely solve problems. True character is built when we choose goodness over and over again. I do not stride into rooms full of people ready to share my life-changing agenda. But I do have a different kind of strength.

My strength is not particularly bold, and it may not be noticed by the casual observer. But it is still there. Try as I might, I am incapable of looking intimidating–I am just too friendly. However, I have the quiet strength that comes from choosing hope, even when things look beyond repair. I know how to sit next to a friend in tears, understanding that my presence means more any platitudes I could recite. I can bake cookies with trembling hands because I want to show a loved one that I am grateful for their presence in my life. I understand how to listen to a long-winded stranger share his opinions because I know what it is like to need someone to hear me. I have walked through dark places and I’ve made it into the light. These are the things that make me strong. These are the things that allow me to live with happiness, even while dealing with chronic illness.

I don’t think we celebrate quiet strength enough. It is tough to consistently choose love over fear, and it takes strength to live with compassion. I am guilty of not recognizing the courage it takes to live with grace and kindness, but I want to change that. Quiet strength often goes unnoticed because it becomes deeply ingrained into a person’s character– it is part of them. Still, we need to acknowledge those people in our lives who show quiet strength.  They deserve to be celebrated. It is just as noteworthy to make daily sacrifices out of love as it is to show one large act of bravery.

Today, I choose to embrace my quiet strength, and I encourage you to do the same. I let go of the idea that power and strength are the same. I remind myself that I do not need to make powerful speeches in order to change the world around me. I choose to show love. I look for hope when things seem grim. And I am grateful for the women who have shown me the power of quiet strength, because they have impacted my life more than the heroines on television.

Loving Yourself on Hard Days

Good in Every Day SelfieSome days are hard, and the past three days have been that way for me. I am exhausted and my heart rate is elevated. And while I’m getting used to dealing with these symptoms, the disappointment that comes with them doesn’t go away. It still hurts me to cancel plans and I don’t enjoy asking for help with simple tasks.  It’s humbling to admit that I don’t have much control over how I feel from day to day.

I’ve worked hard over the years to develop personal freedom and independence. It’s been a real struggle for me to accept that I have a purpose that is not dependent on what I do or what others think. I’ve fought to hold onto the truth that I am worthy of love, even on my worst days.  When I first met S, I was clear that I am a “strong and independent woman.” I must have said that phrase to him at least a dozen times before we even started dating because I needed him to know that I didn’t expect him to determine my self-worth. More importantly, I had to remind myself that while the relationships in my life are important, they do not take away my responsibility to love myself.

Over the past six months, I’ve told myself over and over it’s okay to ask for help. And I’ve realized that asking other people for help can be an act of self-care. If I choose to be without something I need because I won’t ask for help, then I am ignoring my responsibility to love myself. I wouldn’t want someone else go without what they need, and I can’t ignore my own needs, either. It may be humbling, but asking for help is especially important for me right now. At the same time, I have to remember there is an end to what other people can do for me. I can ask my loved ones to drive me to appointments, help me with errands, and sit with me over tea, but it’s unreasonable to expect them to take on the responsibilities I have to myself.

You see, no one else can convince me that my story matters. No one else can reach into the darkest parts of my soul and show me that I am beautiful, no matter what. I have to do that for myself. I firmly believe that compassionate people can help, but they cannot do the work for me. The most loving, helpful team of people cannot rescue me from the project of loving myself. They cannot force me to forgive myself for the mistakes that only I know about and they will never be able to repair the broken parts of my soul.

I am sharing this truth with you because I know that it’s hard to accept what you can’t change. It’s hard to live with chronic illness, shame or emotional pain. And it’s hard to admit that you don’t have it all together. But please, don’t let the difficulty scare you away from finding hope. Because there is always, always hope. There is hope for me on the days I cannot get out of bed and there is hope for you when you feel terribly alone. And when we find that hope and choose to love ourselves, hard days can still hold joy. The past few days have left me unable to do much outside of my bed, but I’ve still been able to find goodness in them. I’ve focused on my adorable cats, lasting friendships, fresh flowers, and kind husband. And I’ve celebrated the beautiful, abundant life I’ve created for myself. As difficult as illness can be sometimes, it can’t take away my joy or my self-love. I hope you will work to make the same true for yourself.

Kind Neighbors

IMG_20140801_185729My neighborhood doesn’t look like the one where I grew up. As a child, I lived in a lovely house at the end of a cul-de-sac, and it was a great place for me to be. I am thankful for my childhood home and the kind neighbors. But when I look out my window now, there are far more abandoned houses. Some homes are divided into apartments, and others are owned by families. There’s a group of homes near us that provides transitional housing for veterans and recovering addicts, and that makes some people uneasy (the residents are actually great neighbors). I live in an area that some people snub, thinking that it’s not as nice as the local suburbs. But I love it here. S and I moved here because we believe in the future of this neighborhood.  It’s not a perfect place, but we have come to appreciate the beauty here. Being ill has allowed me to invest more into my neighborhood by getting to know neighbors and the people who walk by my house every day.

Today I willed myself to sit on the front porch, even though I felt exhausted from a medical appointment this morning. I came outside and I looked around to enjoy the mature trees, perfect weather, and cobblestone street. I glanced at our lawn and noticed that it was long. I added mowing the lawn to the mental list of chores that need to be done at home, and I tried to focus on the beautiful parts of my street instead. Then a neighbor I’d never met came over from across the street and started mowing my lawn. Right behind him was another man who I’ve been getting to know over the past few weeks, and he did some weed whacking and edging for us. I thanked them as tears welled up in my eyes and I tried not to cry. Thankfully, I was successful. I think the gentlemen would have been a little confused by tears.

My illness has brought feelings of isolation back into my life, and getting to know my neighbors has helped me feel like a part of something. However, today I felt pretty alone. When I had a few people show my a simple act of kindness, it made a big difference in my day. I was reminded that people in my neighborhood take pride where we live. And I felt privileged to have people around me who care enough to help me have a nice yard. It may be a small thing to some people, but it means a lot to me right now.

Please don’t underestimate the power of showing kindness to other people. You don’t need extra money to be kind, and it is a gift you can always give. Kindness is possible in the nicest neighborhood and the most run-down street. And it’s something that everyone understands, no matter their background. Please remember that some of us are fragile right now, and we may need some extra love. Feel free to ask us if you can help, because we can be too prideful to ask for a hand. We let the grass grow and the dishes pile up when things are tough, but we don’t like it at all. Or we may just feel alone and need someone to show us that we are not alone, even on our rough days.

Today I am grateful to live in a neighborhood where kindness can be clearly seen. I am grateful for the train whistles and kids yelling and neighborhood cats. I see hope for an area that some people ignore because I understand that while the kindness of my neighbors cannot be included in my property value, it certainly makes a difference in my life. 

Changing My Routine

This week I read a newsletter written for women with chronic illness, and I was inspired to try a different approach to my mornings. I put more effort into my routine by showering, moisturizing, fixing my hair, putting on a bit of makeup, and wearing a cute (and comfy) outfit. I took things more slowly than I did when I was healthy, and I made a few changes to my old routine, but I did it. Those of you who live with illness know that being able to get ready and look “normal” is an accomplishment in itself. I dealt with physical pain most of the day, and my symptoms remained the same, but I felt good about myself. And I felt confident about my appearance for the first time in too long.

IMG_20140912_144114

We know that illness affects the body, but we don’t always consider how chronic illness changes the way we see our bodies. There have been dozens of times I’ve thought to myself, “I am fighting against this body” or “I wish my body would cooperate today.” In the process, I’ve seen it as something that I battle. It’s been challenging to love the very thing I am fighting against. I’ve decided that I need to change my point of view. I started by following a morning routine in which I care for my body. It’s helped me change my perception of what I’ll look like while living with this illness. I know that I won’t be able to blow dry my hair or shower on my really bad days, but I am learning to do what I can to help myself feel better about the body I am in.

You see, I can’t change my illness. I can manage it, accommodate it, and be grateful for good days, but none of that will make it disappear. It’s taken me months to accept that my life will not be what I’d expected. That doesn’t mean that my life is less worthwhile, but it changes how I think about my future. Accepting a new way of life means that I have to be more intentional about caring for my body because it’s not as resilient as it was before. I will need to use my transport chair sometimes, and I may be judged for looking “normal” while riding in it. I may get stares from strangers who don’t understand that I need a lot of help, even though I don’t look terrible that day. And that sucks. However, I refuse to feel bad about how I look in order to cater to the misconception that illness is always visible. I will not let ignorant people determine the way I live my life, and I won’t hate my body because it doesn’t function the way I’d like. Instead, I’ll do the best I can to enjoy the life I’ve been given.

Today I am reminding myself that life can be beautiful when it’s not perfect, and I am challenging myself to treat my body well every day.

If you’re looking for more inspiration on this topic, I recommend checking out Lottie Ryan’s newsletter.

Clarity and Grace

Grace quote

Living with my illness has brought more clarity to certain areas of my life. It’s shown me that people who’ve stuck by me no matter what are the people that most deserve my loyalty (see this post). It’s taught me that some people cannot or will not stand with me when life becomes messy and uncertain. Some people take from us, and for whatever reason, they rarely give in return. I hope that I have learned to accept these truths with grace, but when I am honest with myself, I have to admit that the path to that acceptance has been full of tears and anger. 

I cannot tell you that I’ve only been on the receiving end of abandonment because that would be unfair and untrue. About a year ago, S and I had some friends that went through a messy and difficult time. I didn’t know how to best respond to the situation, so I slowly walked away from our friends. I am ashamed of that decision. Now I know that there is not one “right way” to stand with someone during a terrible time. The important part is sitting with them in the unknown and showing up when life isn’t clear. I sometimes wish that life was black and white or that every problem only had one solution. As I’ve grown as a person, I’ve realized that a black and white life would indeed be easier, but it would be much less beautiful. There would be less opportunity for grace in a black and white world, and I need grace.

Yesterday I sat down with the friends I had walked away from and I apologized to them. I told them that I was wrong– because that’s the truth. My decision to fade out of their lives was a choice, and it was not a good one. Interacting with them during my illness has been a spiritual experience for me because they’ve shown up and loved me when other people left. Despite my hurtful choices, they showed grace and compassion to me. They know what it’s like to be abandoned, and they refused to abandon me and S. They chose to be present.

After I apologized, one of our friends looked at me and said “Now I don’t have to love you anyway, I can just love.” Those words have played over and over in my mind the last 24 hours. Grace is choosing to love anyway, despite pain or disagreement with someone. Choosing grace does not mean I agree with how someone handles every aspect of their lives, it means that I can love them anyway. It means that I am loved in my messy imperfection. Grace means that I love other people when they stray from black and white and walk into the grey areas of life. And when someone accepts the grace that is offered, they are able to walk into forgiveness and rebuild an authentic relationship. I am grateful today because I get to have an authentic relationship with people who have loved me in my messiness and who will stand by me in my brokenness.

Today, I encourage you to look at how you’ve given and received grace in your relationships.

Enough

YouAreEnough (source)

I am a person who feels deeply; I experience emotions in a big way. I have always been a tender soul. My dad warned me to make decisions with my head instead of my heart, and I think he told me that because he knows how easily I can be overwhelmed by my feelings. My capacity to feel deeply has made me into someone who truly cares about the well-being of others. It has caused me to educate myself on issues of social justice because I can’t turn away when I hear that someone is being marginalized or bullied. In my adulthood, I’ve learned to use my tender heart as as asset, but that wasn’t always my experience. My tender heart was ruled by shame for years. I saw society demand perfection in exchange for love, so my heart drove me to be “good enough,” “pretty enough,” and “smart enough.” I learned the hard way that perfection is impossible, but I also grew to accept that I AM ENOUGH, even in my imperfection.

I believe that we must remind our hearts of the truth because there are lies floating around that we hear over and over again. We hear that our worth is determined by what we do, and we try to do it all. We’re told that thin is better, and we believe it. We see impeccably decorated homes online and go out to find a throw pillow to fill our emptiness. None of our attempts to “be enough” satisfy us because we can never live up to every expectation. We’ll never be perfect. And so, we put on the cloak of shame and hope that it will cover up all of the things we are not, never noticing the good things that we cover up in the process.

My tender heart has experienced a lot while I’ve been ill. It’s heard a few whispers that I am not “enough,” and it has considered giving in to shame. It’s considered going back into the dark places where I lived my life for too long. Being ill limits my ability to do certain things, so my heart may hear for a moment that I am without purpose. But when I cling to the truth, I see that my worth is not determined by what I do. My worth is found in who I am, and that does not change. Illness cannot steal my worth from me because I have already found worth in myself that is not determined by being “enough.”

My message today is that YOU ARE ENOUGH, too. The battle you are fighting right now does not define who you are. I am loved. You are loved. Let us take off shame today and remind ourselves of the truth.

This post is largely inspired by Brene Brown’s TED talks on vulnerability and shame. I encourage you to listen to them for yourself.

New Purpose

StephenDanielleSummer2014

When I first started having symptoms, I longed for a diagnosis. I thought that if I knew what was wrong, it would give me peace of mind. I was fortunate to get my POTS diagnosis within a few months of onset. Many people have to wait years for an accurate diagnosis, and I am grateful for a nurse practitioner that kept trying when I had an unusual set of symptoms. Knowing my illness has helped me to understand some of what is happening with my body. Still, there are some things that come with chronic illness that I couldn’t learn about through online medical research and education.

Most of my life, I’ve had a purpose that was easy to identify. When I was young, I was overly invested in my schoolwork. In college, I became passionate about social justice issues and mental health. I focused my studies on these issues so that I could live out my beliefs in those areas. Once I graduated from college, I spent my workday walking alongside people with severe mental illness. When someone asked me what was going on in my life, I could always talk about school or work. People usually want a short answer to the question, “What do you do?” and I’ve perfected my response over the years to a sentence or two.

And then came chronic illness. I don’t have a “typical day.” My activities usually depend on how I feel that day and if my body is willing to cooperate with my plans. If I have an elevated heart rate, it’s not realistic for me to leave home. Sometimes I cancel plans because I know that I cannot physically do what I’d hoped. One of the most difficult things for me has been leaving my job. I may be able to go back a few months from now, but I am unsure if that will be possible. I wasn’t able to wrap up things at work before taking my leave. I got really ill one day and left early. Since then, my doctors have advised me not to work. I love my job, and my co-workers are great people. I miss working with the patients I’d gotten to know so well. My first few weeks off work were spent thinking about the patients, asking myself, “How is she? Is he staying clean and sober? Will she succeed in meeting her goals?”. I miss the little moments when I saw progress. I even miss dealing with the behavioral issues with patients, because I knew I had an opportunity to help them grow. Leaving work felt like walking away from my purpose. As an adult, I have felt most alive and purpose-filled when I helped someone, and I got to do that every day at work.

Now I am the one who needs help and I feel powerless more often than I’d like to admit. And it feels natural to stay in the dark parts of my mind and feel sad. Learning to live with a chronic illness requires a grieving process. I am still working through my grief, but I have started to accept some of the changes in my life. It’s helped me to practice gratitude on a daily basis. Little by little, I am working toward living a full life. Today I made a list of things I can still do to bring joy to myself and others. It brought me some peace to write down a dozen things that I can always do. Here are a few of my favorites:

  •  wave at neighbors
  • kiss my husband
  • practice gratitude
  • encourage a loved one
  • write letters to pen pals
  • watch good movies

I am learning to redefine my purpose. I may not have the clear-cut title of student or case manager, but I am still a friend, wife, daughter, and neighbor. And for now, I want that to be enough.

 

Love,

Danielle