Category Archives: Self Advocacy

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Four Ways to Create Your Own Best Chronic Illness Life

I’m still learning about living life with a chronic illness. I’ve been sick all my life, but it’s not like a person can master how to live gracefully and courageously when they’re fighting with a body that doesn’t seem to want to take orders. I don’t have it all figured out, but every day I work hard to become uncommonly brave: to live my life under my terms with a sophisticated peace that conveys I am the author of my own experience.

Want to create your own best chronic illness life? Where do you even start? Here are a few thoughts to get you going:

  1. Your nest. Think about your home, your bedroom or the place you spend the most time when you’re feeling ill or having a bad day. This is a great place to begin. What would help you feel more comfortable here? Do you need extra pillows, a special chair or a bedside reading nook to create a space that feels warm and inviting? Or do you need a desk where you can be productive for a few minutes at a time? Make plans to redesign your space to make it work for you and your unique needs and desires.
  2. Your free time. Think about what you tend to do with your free time. Maybe you already take long walks on the beach or in the woods. Maybe you love window shopping or crafting gifts for others. Whatever it is that fills you up, do more of this! When we’re sick, we tend to stop doing the very activities that might distract us from our illness and bring us internal strength. If you’ve stopped doing these things, start today. Even a few minutes of soul-filling activity is worth it! And if you need help, ask for it. Maybe you can’t walk through the woods, but you could use a nice drive to a park. Make it happen today.
  3. Your work time. Think about how you spend your hours contributing to the family income. If you don’t work outside the home, think about the activities you do inside the home. We all spend a lot of time at our workplace or working at home. Do what you can to bring life and joy to this situation! Pin up pictures of things you care about in a work locker or in your cubicle. Add color to  your office or computer area. Find a few favorite restaurants that deliver. Block out time to have lunch with a friend. Start simple, but make this area and the time you spend in it something you look forward to. Sometimes even the simplest things can make a huge difference.
  4. Your life. Think big! Do the suggestions above seem too small? Then think bigger. Maybe you don’t need a few minor improvements to create a life you love. Maybe you need radical change. Of course, I’m not advocating you make reckless changes to your life (like quitting your job without another income or moving to a place you have no support system developed). But if you’re really feeling like your life has become unbearable, it might be time for a major adjustment. Maybe it’s time to gather a few friends, share your dreams and talk about how you might achieve your goals, despite your illness. It’s never to late to start again.

Life is just plain difficult when you’re living with a chronic illness, chronic pain or undiagnosed illness. But though your body might rebel, you still have the ability to affect positive change in your life. Why not start now?

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My Chronic Illness Bucket List

We all have dreams: things we want to do, places we’d like to go, people we’d like to become. Humanity has been gifted with the inordinate capacity to dream about becoming something more than they already are. People who deal with chronic illness share in this too. We’re not as discontent as we might sometimes feel; instead sometimes we’re simply wrestling with the craving to reach out and touch the stars, to experience life to the fullest.

Dreams are amazing. But if our lives are only spent dreaming and are not also spent doing, we will end our existence with a pile of regret. Anyone with chronic illness familiar with regret? Most of us are likely too cozy with this feeling. So this year, I challenge you to make a bucket list. You know, that list of dreams you want to accomplish before you “kick the bucket” and you no longer have the chance. Why not take a few minutes and think about what’s really important to you? (Can’t leave your bed? Check out my post about a bedside bucket list.)

Personally, I’ve always been quite goal oriented. It’s super important to me that people in my family, on my work team, and in my life are all headed in the same direction, working together to achieve the same goals. And every year I set personal goals. Some of them are short term desires, and a few are long-term dreams. I find what’s written down and reviewed regularly will receive a ton more attention that what’s simply floating around in my mind.

To be honest, though, I’ve never created a dream bucket list. I’ve had ideas of things that are important to me, but when I got sicker, I sort of stopped dreaming. And a bucket list seemed extravagant to me. For a while, I stopped doing too; I only had the energy to attend to the “must do” list. Certainly anyone with chronic illness can understand what that’s like. Some days, some weeks or some years are simply difficult, to say the least.

But now…now it’s time…time to fight for my dreams.

Today, I start my bucket list. I’m going big.

  • Item #1: Visit Paris. It’s always been my dream to visit France. Time to make a plan?
  • Item #2: Own a house on a lake. Well, at least on water. This one might happen soon. It might be a pond, but I’ll take it. It’s so exciting!
  • Item #3: Become a magazine editor. Wow. That one just happened. I’m the new editor for the Mastocytosis Chronicles. One edition down, lots more to go.
  • Item #4: I don’t know…

My personal assignment to myself: finish my bucket list. Dare to dream. Chronic illness is NOT an excuse for giving up on the human search for life at its fullest!

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Tips for the Newly Diagnosed (Thank You to the Ronald McDonald House)

Tonight marks the end of our 10th trip and the 102nd night our family has spent at the Ronald McDonald House in Rochester, MN during the last six and a half years. As I sit in one of the common areas and type, I cannot help but think of all the families we have met here over the years: some with children who were struggling to stay alive and some with children like ours who are struggling with how to live.

When you’re not a member of the illness club, or a parent who cares for a sick child, you don’t realize what it’s like to live life differently. Back home, people see me as a leader, friend and even a confidant. But most will never see the other roles I play because three people in our family are sick: patient, caregiver, pharmacy tech (you should see our cupboard), part-time insurance and billing coordinator and pseudo-nurse. But as I have explored the halls here at the Ronald McDonald House and at the Mayo Clinic where we receive treatment, almost everyone I see understands these roles all to well…or they will soon.

So tonight, I was thinking…what would I say to a parent or patient who was just starting down the road of difficult illness? (Because there’s not nearly enough information out there for the newly diagnosed!) Here’s what I came up with:

1. Be Patient

Life slows down when you’ve received a diagnosis. And, MOST medical care is not emergent. Unless you need the ER or emergency treatment, everything will take more time than you like. When you’ve received a difficult acute or chronic diagnosis, take a breath. Yes, the patient feels terrible, and it’s devastating to try to take it slow when you see those you love in pain or dealing with illness. But the medical professionals have reasonable reasons for taking it slow. It really is better to change one thing at a time…so you know what’s helping and what’s not. So try hard to take a deep breath and give each treatment or change time to start working.

2. Be Persistent

A diagnosis means YOU have just become responsible to understand and advocate for yourself or your child’s illness. I wish all families new to illness would instantly know what to do in every situation, but it’s not that easy. You will likely need to do some research, make sure you’re seeing the best experts available to you, and learn how to listen to and communicate with doctors and medical professionals. Without stating it too strongly, it is your responsibility to learn everything you can about this illness and understand any treatment plans. Doctors are experts in medical management, but parents and patients are experts in their own and their children’s needs. Speak up when you need to, and be an advocate for yourself or your child.

3. Be Perceptive

Along with illness comes emotion. We all have feelings. Caring for difficult physical needs is not emotionally easy. In fact, it can be downright hard to recognize and accept the “new normal” you’re encountering. Whether this new normal involves living in a hospital, dealing with daily symptoms, medications or treatments, or simply coming to terms with newfound boundaries, our emotions are intimately involved in living well with illness. Be perceptive of your own needs and the needs of your loved ones. Children and adults alike can have some very profound thoughts and questions as they work to understand and cope with illness. Keep talking and exploring, even if you don’t have all the answers.

4. Be Present

Life doesn’t end with a diagnosis. (Even if it seems that way right now.) Ill people and their families have a ton to deal with, but normal things, even fun things, still occur in their lives. Making dinner still needs to happen, even if it’s a call for pizza delivery. Washing clothes is still important. And even doing homework can be a priority. Interestingly, ill people have a great deal of time on their hands…typically spent feeling sick or in pain. But they also wait a lot: for treatments, for doctors, or for answers. Plan ahead now to use this time well. Try not to spend it feeling sorry for yourself or your loved one. Instead, be present with them. Use it to do something fun, or at least distracting. And make the most of each minute. Ill people are still living…so LIVE!

Surely there is much more information and there are many more practical tips to help those dealing with new diagnosis, but those four thoughts are a great starting place. And if I added a fifth tip, it would be this: be open to help. I love coming to the Ronald McDonald House, and for sure, it’s not because I love illness. I love coming here, because I am surrounded by families who “get it” and served by strangers, and after ten visits now, even a few people I can call friends. They cannot make my children or me better, but they do what they can to make everything around me just a little bit easier and even a little bit more fun.

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The Perception of Invisible and Chronic Illness

It doesn’t make sense. I look fine on the outside. And, I’m so not fine.

Logically, I can understand why well-people seem unintentionally ignorant at times. Because I hardly ever look sick. The old adage “what you see is what you get” doesn’t apply to those with invisible illnesses. Some people will never understand how everyday tasks can be exceedingly difficult or even impossible for me. They don’t see me during the hours I’m at my worst, because that’s when I stay home in bed or spend time on my couch. They probably won’t see the baskets of meds on my shelves or the volumes of medical paperwork I work hard to keep organized. Well-people don’t know how long my morning routine must be to accommodate the difficulty of just getting my body going. Hopefully, people will only see me at my best…as a productive member of society, contributing in my own unique way. Because while I am sick, being sick is not my identity.

But what’s on the outside doesn’t always display what’s really happening.

People with chronic illness can get very angry when the well-people around them speak or act out of ignorance. Well-people cannot ever understand what it’s like to be sick. And the result…some well-people seem to have what might be referred to as “foot-in-mouth disease.” Even the simplest question from a well-person (“How are you feeling?”) can prompt a wave of frustration from someone whose illness can change on a dime and who thus never quite knows how to answer. Though most well-people have good intentions, their uneducated questions, not-so-helpful hints and personal “when I was sick” stories can be exhausting and enraging for the sick.

Personally, I’ve decided to counter ignorance with love. That means when I get an uneducated question, I try to respond with grace. And when I get those helpful hints on diets, exercise, vitamins or the latest treatments, I listen to see if by chance they know something I don’t that actually might be helpful (even just a sliver of helpful). And when they offer their “when I was sick” stories, I pull out as much empathy as I can find…because even well-people like to know their story is valuable.

So, go ahead and wonder what it’s like to have chronic or invisible illness. But if you ask me…and really mean it…be prepared for my honest answer. Because everything is not always as it seems.

 

 

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You can experience hope in the midst of chronic illness!

Albert Einstein said, “Nothing happens until something moves.” That’s true in much of life, but perhaps even more so in the chronic illness community. The truth is that unless we are willing to put ourselves out there…to hope for a better future AND then move toward it, nothing will happen.

It is HARD to hope. Sometimes, it would seem that we hope and wish for a diagnosis, a treatment or even a cure. And each time we don’t achieve our goal, we can loose sight of a better tomorrow. It takes a ton of emotional resources for someone with chronic illness to hope. Because chronic illness, rare disease, invisible illness, undiagnosed illness and chronic pain each require most of a person’s daily emotional resources. Meaning, it’s just plain hard to deal with decreased capacity, whether it’s physical, emotional or intellectual! Our spirits get tired.

Yet good things happen when you dare to hope and then choose to act. A new, better physician can be found. A medication trial can begin. You CAN make it out of bed and have the pain melt away when you don’t think it can get any better. Your son or daughter can make friends despite their unique medical needs. You can make a difference, even if you can’t do everything you used to or even everything you want to. Action matters.

I’m not sure where you are at today – just hanging on by a thread or feeling full of personal power. In either case, do what you can to embrace hope. Embracing hope is the best thing you can do for yourself. For when you hope…you eventually act! Moving forward requires a vision for a better future AND action toward that future.

What can you do today that will stir up hope in you or move you to action?

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With chronic illness, you are the expert in your own body!

I don’t know about you, but sometimes I wonder if doctors are listening to me. Sometimes, it seems like what I say is being heard (i.e. – my body is making sound waves that travel through the air to the doctor’s hear). But at the same time, the doctor is not really listening (i.e. – concentrating so the brain processes meaning from words and sentences).

Or maybe doctor’s are listening to me, but the meaning they understand from my words is not really the meaning I wish to convey.

Perhaps doctors don’t listen because I’m not being clear. OR more likely, perhaps the meaning a doctor understands is not full and complete because THEY HAVE NEVER LIVED WITH MY ILLNESS IN MY BODY. So when I say my face flushes, for example, they might take that to mean my face gets red. When I might really mean, my face gets red, feels like it’s on fire, and causes the rest of my body to feel like it might burn up from the inside out. Same word: “flushing.” Very different understanding.

So today, consider how you’re communicating with your physicians, but also remember that you are and always will be the expert in your own body! Just as we must learn to communicate with doctors so they really hear what we’re trying to say, we also need to learn to do so with a sense of self-advocacy. A doctor’s job is to understand the science and technique behind wellness. But that doesn’t make them omniscient. Sometimes, even within illness categories, what works for one might not work for another. It’s okay to tell a doctor something isn’t working for you. (Of course, give it time if it’s a treatment that needs it!) And if you have suggestions, gather the courage to bring them to the table. You are the expert in your own body. Live that way!