Category: chronic illness

chronicchristmas-coverAdvocating for chronic illness is a year-round job, one we do with passion and dedication. But advocacy can get more challenging during the holidays. It’s a busy and sometimes emotional time of year and there’s only so much energy to go around.

My new book Chronic Christmas: Surviving the Holidays with a Chronic Illness is an Advent calendar of tips to help you savor the season. When writing it, I wanted to not just deal with things you can do yourself to enjoy the holidays, but something more, as well.

So much of living well with chronic illness has to do with the reactions and support we get from others. That’s why I included a section in each chapter for friends and family who want to help, but may not be quite sure how to do that. In these, I shared information about the reality of living with chronic illness to explain why certain types of help may be a better choice than others. It is my hope that reading Chronic Christmas will help your loved ones have a better understanding of life with chronic illness and in so doing, be better able to contribute to your quality of life.

Navigating this season with a chronic illness and the desire to create change is a physical and emotional challenge. Other than thrusting my book at all and sundry (joking… maybe), what can you do to advocate for yourself and others this holiday season? Here are a few suggestions.

Dealing with difficult people

We all know them. That person who makes a beeline for us at social events, ready to share esoteric techniques bound to cure our chronic illness. This type of diet, that type of home remedy, and their hairdresser saw something on the Internet about leeches. You could roll your eyes and walk away, but you could also seize the moment and give solid information about your illness and its appropriate treatment. Don’t wait to get cornered — this type of situation can feel emotionally fraught when you’re dressed for a party and there to have fun. Preparing what to say before going out helps you click into health activist mode when needed.

A baking brigade

Have you ever heard of a cookie exchange? This can be a wonderful time and energy saver. You collect a group of people, each of whom makes half a dozen or a dozen cookies. Then you get together, share the treats, and everyone goes home with a variety. Being part of a cookie exchange is also a great way to share information about the impact of trigger foods. Find out which kinds of sensitivities and allergies are present in the participants and their families. When the instructions go out, make sure you include information about the consequences of eating such foods, as well as ways for food be safe.

Say hello

Living with a chronic illness can be a very isolating experience. Pain and fatigue makes you turn inward and block out the world around you. One of the suggestions in my book is to deliberately engage with the world around you. Turn off the music, put the phone in your pocket, and look up. And then start talking to the people you meet. The barista at the coffee shop, the homeless guy on the corner, the person next to you on the train. Smalltalk can lead to deeper conversations where it may be natural to talk about chronic illness.

Chronic illness advocacy can take a variety of forms, from big to small. You may not have the energy or to testify to Congress, but there are opportunities in your everyday life to educate and advocate. Often, those small moments have ripple effects. You talk to one person, they talk to their friends, and the message moves.

For the days when you are feeling exhausted and wish you could do more, remember this one thing: when you create change in your life, you change the world.

lene-andersen-2Lene’s new book is Chronic Christmas: Surviving the Holidays with a Chronic Illness. She’s also the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, 7 Facets: A Meditation on Pain, and the award-winning blog The Seated View.



“As a health activist community we need to continue our fight! People are starting to listen and our voice is starting to bring about change.”

A powerful, but exciting and true statement, especially from CRPS/RSD health advocate Ross McCreery, who works endlessly to make a difference.

image (2)When Ross failed to find the help he needed to diagnose and treat his CRPS, he started sharing his own journey with others. This, in turn, sparked a passion to help others who were fighting similar battles, but mostly prompted a need to educate and raise awareness for this rare condition. As Ross continued to network he found his voice by realizing that he “didn’t want to just sit around waiting for things to happen. I wanted to make whatever difference I could no matter how big or small. I just decided to put myself out there and jump in with both feet.”

And oh did he jump! Frustrated from the doctors, physicians and government not really understanding his illness, he decided to do some research into his Provincial and Federal Health Care just last year. Unfortunately, his research revealed just how little was being done in research and care for those affected by CRPS. So it became Ross’s mission to raise awareness and bring change: addressing the lack of education and expertise needed to diagnose and treat individuals with CRPS, and working with the government to make sure it recognizes chronic illness for what it really is.

With his advocacy, he hopes to see more funding and research going into findiFun Facts With (1)ng the cures for his illnesses. He also hopes his efforts will improve the interaction between patients, healthcare and the government. Ross recognizes that chronically ill patients are often told that their issue is “all in their head” which can invalidate the patient’s voice, but he refuses to sit back and let the injustice continue. Ross has sent letters to the Premiere, Health Minister and other officials in an effort to make this change an important initiative.

Fortunately, his impressive efforts have brought great success! Ross contacted his Provincial Government and was successful in having a CRPS Awareness Day for the Province of Saskatchewan. Ross plans to hold an event on this day with goal of not only raising awareness, but also raising funds for research and education. He hopes that one day, CRPS Awareness Day will become nationally in Canada!

If you’re not already feeling completely and utterly inspired from what Ross has accomplished, consider this recent quote from the outstanding advocate himself: “…you can’t make a difference if you’re sitting on the sidelines waiting for things to happen.” Instead, he advises us to find the courage within yourself to take action and “…believe in yourself and know that you can make a difference.”

Ross is clearly an advocate to admire and he definitely deserves the support and respect of the online health community, so head over to Ross’s blog and make sure to follow his twitter and Facebook account in order to stay up to date with CRPS Awareness Day!

Kristen LongKristen Long, WEGO Health Activist Awards Coordinator is the Health Activist Awards Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Follow Kristen onTwitter andFacebook.




Today we have an empowerment-themed interview with wonderful Health Activist Annie Martin. Annie blogs over at Fragile Annie, where she focuses on moving past chronic illness into living well or, as her blog states boldly: “It’s Time To Get Over How Fragile You Are.” Her blog affirms this positive stance and it was a great experience to hear her take on our theme of empowerment and how she works to empower herself and those around her. Thanks so much for sharing with us, Annie! –Amanda


WEGO Health: How has the idea or goal of empowerment inspired you as a Health Activist?

Annie: When I first started my blogging journey, I was frustrated and needed to vent to someone who wasn’t in my direct family!  I had already been sick for about 10 years, and had been treated horribly by so many doctors who stated that this illness was all in my head.  I had no idea that I was going to find a massive family of fellow Fibromyalgia and ME/CFS sufferers along the way.

I felt like no one could understand me on Prince Edward Island, so I turned to the Internet instead.    People I know would listen and learn to be gentle with me (and others suffering from illness). I figured, if nothing else, I can put a face to these illnesses.As the blog grew, I collected more and more diagnoses, and expanded to being a health activist through the blog and through twitter.  Both keep growing every day, as I find more and more people who live like I do and need the support.

WEGO Health: How have you empowered yourself through your Health Activism?

Annie: Before I started being a health activist, I was incredibly hard on myself.  As I couldn’t relate to anyone, I blamed myself for everything that was happening to me.  Blogging about health made me realize that just because I am afflicted with something terrible does not mean I am any less of a person.  It gave me a goal, and became my pride and joy.  I would receive emails saying that a blog entry of mine changed someone’s life entirely, or saved them.  Those messages just made me strive to empower myself and others even more. People with illnesses may not be able to do everything that everyone else can, but we have a set of skills that are still very important and need to be embraced and loved.

WEGO Health: What does “being empowered” mean to you?

Annie: Being empowered, to me, means embracing what you have to work with and running with it.  I knew I felt empowered when I finally felt no shame toward my illnesses.  I could scream it from a rooftop and it wouldn’t bother me in the slightest.  My name is Annie Martin and I have Fibromyalgia, ME/CFS, Gastroparesis, PCOS, Asthma, and High Functioning Asperger’s. Do they cause me problems?  A million!  But do I let them rule my life?  Definitely not!  I know the abuse that people go through in the medical field when they have something that isn’t easily diagnosed.  I want to do every single thing I can to make sure that stops happening.  No one should have to live their life like that, and have their power stolen from them.

WEGO Health: How can others help empower those around them?

Annie: Be HONEST.  Honesty is how we connect with other people.  Everything that I used to keep bottled up, which I’ve since shared, is what draws people to me.  Everyone says – oh I totally have that too and didn’t know anyone else did!  After that, they feel less alone in the world.  Also, in order to help empower people, you have to genuinely care for others.  You have to want to give them your shoulder during the trying times.  You’ll be surprised at the support you get during your hard moments as a result.

WEGO Health: What tips do you have for others who want to share their story and impact others?

Annie: Work with whatever media style fits your personality.  People can write books, write blogs, Twitter information, update statuses on Facebook, and talk to radio or television.  It is crucial right now to get your voice out there.  So many illnesses have mediocre treatments and no cures.  We need to put faces to these illnesses in the hopes of achieving greater research.  It’s integral to our survival.  I really call to the readers of this blog to take a stand and get their voices heard.

A special thanks to Annie for taking the time to share with us – we can’t wait to see where your empowerment continues to take you and your community!

Be sure to check out Annie’s blog Fragile Annie and follow her on Twitter @fragileannie.


Earlier this month, we asked you to think about how your condition influences your relationships and how you really feel about that. We received a lot of responses – making me realize just how important this topic is to Health Activists. The challenge of relationships is, go figure, not made any easier by adding the challenge of living with a chronic health condition.

Let’s take a peak at the results and see how people voted:

How you feel about dealing with your chronic condition and relationships. (Click to enlarge)

As you can see, the top results demonstrate that struggle that I mentioned back when I explained our February Theme. Conflict! The inherent difficulty that comes with having a good relationship is possibly made even more difficult by adding a chronic condition to the mix. The work involved in balancing, handling, and understanding both at once isn’t easy either. The number one response to our poll question was that you feel “Burdened; sometimes it’s a lot of weight to carry. The second most popular response was “Conflicted, there is so much going on.” Particularly for those waiting for diagnosis confirmation, new treatments, and the daily regimen involved with managing chronic conditions (or pain) – being overwhelmed by everything makes sense. Sometimes when a lot is happening, the hardest part is focusing on one thing and being decisive. But, at least, our third most popular response is slightly more optimistic, making light of the hand we’ve been dealt, feeling “Like being entrusted with an epic quest; this is a challenge.”

What I found most interesting were the write-ins for our “Other” option. Here are a few comments that people shared:

“Bored! I get tired of explaining and people not get it.”

“Frustrated. No end in sight!”

“Apprehensive, because I don’t know how someone new will respond.”

“I feel positive thinking is the only way to battle and overcome this problem!”

“Nobody gets it and that’s ok.”

Do you agree with these comments?

This has been an important exercise – but we can’t end on a note of uncertainty or stay in that state of conflict. So let’s look at what we have here. An opportunity to pause and see there is common ground here, across conditions. The list of chronic conditions is long and diverse, and yet, this poll shows that people of different conditions feel pretty similarly. As commenter Jay said, we “need to add “All of the above” as, at some point, I’m sure everyone feels every one of the options.

Something I’ve heard Health Activists say is that they are relieved, blessed, glad to have their communities because finally they know (and feel) that they are not alone. They, now, know people who really get it, who understand. And, with the internet, they now have access to these other people who can relate. The online space has truly offered something wonderful for those who may live with a rare condition, may live far from in-person support groups, or may not be able to leave home. That’s huge. It is why support networks, health blogs, and forums have become so popular. And while you may not need one more relationship to add to your lives – the relationship between you and your community is an especially unique and beneficial one to nurture.

Why not bring back this topic to your community and see what others think? Sometimes putting feelings into words (or quirky analogies) alleviates them. What do you think your community would select as their most prevalent feeling toward dealing with their condition and relationships? Join the discussion here!

Relationships can be tough, but adding the management of a chronic illness to the mix can create a whole new challenge.

Last February we hosted a webinar about Chronic Illness and Relationships (sound familiar? maybe you attended!). The webinar was a big hit, sparking some great conversation on a tough topic that hit home with lots of our community members and Health Activists. In fact, it’s the perfect sort of content to bring back! In honor of our theme we are resurfacing the webinar in a new, re-vamped 2011 slide-show so we can all take a look at the important topics and questions we covered. Hopefully you will be inspired to bring the ideas back to your community as discussion topics!

Check it out here:

The thing about chronic illness is that it’s probably not going away any time soon – and neither will the challenges that come with having relationships. But, you know, by discussing these topics – and sharing what works – hopefully we can really help one another better deal with and navigate life with chronic illness and relationships.

Feel free to share this blog post and slide show with your community! If it initiates a good conversation, inspires a blog post, or ignites something creative for you – leave us a comment – we’d love to see where you take it and run to! 🙂

Today’s post is a wonderful Guest Post (and must-read!) by Health Activist Julia Olenik blogger at the awesome blog Reasonably Well. In her guest post she shares her experience with that third relationship conflict mentioned in our theme: your condition vs. your family (and friends). Julia offers real, honest advice and I know you’re going to enjoy reading this as much as I did. –Amanda

February, Family, and Friends

The month of February brings with it several interesting events; one being Groundhog day, when it’s so gratifying to anticipate the end of winter. Another is Super Bowl Sunday and the best excuse ever to gather in large boisterous crowds in front of huge televisions while consuming large quantities of really-bad-for-you snacks.

But my favorite day by far in February is Valentine’s Day. Why? Well, gifts of chocolate in heart shaped boxes from a wonderful hubby for many years are very, very good things. But aside from chowing down on a serious amount of high quality candy, Valentine’s day also is a great time to for me to take time to appreciate not only my marriage, but all the relationships with others around me.

When I think about my relationships, mostly I think about how fortunate I am to have these special folks around me, especially since autoimmune disease entered my life. My ties with my family and friends were certainly tested during the early days of my diagnosis. I am incredibly thankful that these vital bonds survived, and eventually flourished. But it wasn’t an easy process.

Seven years ago, I was diagnosed with Sjogren’s syndrome, and my life changed in ways that I would never have imagined. I wish that I could say that I accepted these changes with grace, but I didn’t. No, I became crabby and very self-centered. Not that I didn’t deserve to be a bit cranky: Sjogren’s brought with it bone-crunching fatigue, joint pain, the classic dry eyes and dry mouth. It also took away my job and several of my hobbies.

I was not a happy camper.

As I struggled to adjust to the enormous changes that my body was making, I became aware that my social circle was changing, too. Several friends that I had considered close began to just……fade away. My family and closest friends often looked at me with puzzlement and concern. They didn’t know what to make of me, and I didn’t know what to make of me, either. It was a difficult time, and I knew that if my ties with my loved ones were to survive, I needed to look to the wisdom and experiences of others who had successfully made this journey before me.

I found a helpful perspective from another woman dealing with chronic illness in the book A Delicate Balance: Living Successfully With Chronic Illness, (Perseus Publishing, 2000, pg. 191) In it, author Susan Milstrey Wells dove headlong into these same issues. She discussed the many ways that chronic illness may impact all of our relationships – those as a spouse, a child, a sibling, a parent, a co-worker, and as a friend. She summed up her experiences by saying:

Continue reading after the jump… Continue reading →

In honor of this month’s theme Chronic Conditions and Relationships – our February HABC is: Write a Letter to Your Condition. Sounds a little strange?  It is, because you’re penning these words not to a real person, but to your disease, personified.  Inspired by the old-fashion correspondence of snail mail (or, I suppose, you could be inspired by the art of email), write a letter, a note, a memo addressed to your health.

This is your chance to tell your health what you really think of it, how you really feel … and no holds are barred in this exercise.

Whether you’re writing a letter of love (which may be a challenge) or a note that describes what you’re working on in your communities to help raise awareness for your health condition – the point is to be honest and to examine your emotional ties to your physical health. This could be a great way to check-in with how you’re feeling and work on that first relationship conflict we mentioned in our theme announcementYour Condition vs. Yourself. And, if you want to complete the correspondence – it would be really interesting to reply to yourself from the perspective of your health. What does your health think about your letter? Bonus points if you write two letters this month!

(If you need an example check out the awesome community Dear Thyroid, built around the idea of writing letters to your thyroid.)

Once you’ve written your letter, we hope you’ll share it with our community by leaving a link in this discussion in the Health Bloggers Group. We also hope you’ll post this brand new graphic in your post to show that you’re a participant in the HABC!  (Because who doesn’t like a Ferris Wheel o’ Health Activism?)

If you’re up for the challenge, you can just start by typing out the words, “Dear Health,” and flex your creative muscle!

photo credit tunnelarmr on flickr

February is here so that means we have a new theme to announce! This month we will be aligning with many retailers’ second-favorite holiday – except that we promise to spare you the saccharine jewelry commercials and obligatory heart-shaped gifting. Our theme is Chronic Conditions and Relationships – two things that affect nearly everyone but do so in individual, sometimes inexplicable ways. There’s a lot to discuss on this broad topic but, as was the case with last month’s theme, you can come here for some ideas, inspiration, and things to bring back to your community.

We’re going to look the “relationships” part of Chronic Conditions and Relationships a bit differently than you might expect. “Relationships” doesn’t always mean “romance,” and we’re touching on all different kinds of relationships in this month’s theme.   Inspired by the six common conflicts of fiction (read this Wikipedia article for a refresher), we will delve into all the assorted (sometimes conflicting) relationships we have in our lives. I’ve decided to explain our topics through the conflicts there. Here’s our look at the different kinds of relationships that we, as Health Activists, may be involved in:

  • Your condition vs. yourself – Sometimes we can be our own greatest support … and also our own worst enemies.  Living with a health condition requires a heightened sense of “self,” and it can be a challenge to assess and keep an upper hand.
  • Your condition vs. your love life – This is the relationship that fairy tales and magazines tells us is most important,  but all that pressure just makes it trickier to balance when living with a chronic illness and daily health hurdles.  How do you disclose it?  Explain it?  Deal with it?
  • Your condition vs. your family – We care about the ones closest to us (this includes friends who feel like family) but sometimes our health doesn’t make it easy. Whether we want to get extra support from these folks or just want to enjoy them and get our minds off our health – keeping the familial relationship healthy is a challenge.
  • Your condition vs. the day-to-day – Chronic conditions find their way into many aspects of life including: our living spaces, our work places, and our daily schedules.  This relationship is one that really relies on balance and mindfulness, and one that Health Activists handle in every situation, every day.
  • Your condition vs. technology – We rely on man-made innovation for so many things – some of which are very health-centric. How technology, medications, and tools interact with our health and chronic conditions is an important relationship to examine, and sometimes, to reign in.
  • Your condition vs. misconception – This is a relationship Health Activists know well. What does the outside world think of your condition? How do you deal with stigma? How is your condition portrayed in the media or talked about in conversation? How can you confront misconception, help educate the public perception, and keep your community feeling supported?
  • Which relationship conflict is the one your community talks about most often? Head over to our Community and add your thoughts to this discussion. Be sure to check back in throughout the month for some prompts, featured conversations, interviews, and other activities for you to try in your health communities.  And as always, thank you for everything you guys do.  The relationship between Health Activists and WEGO Health is a solid one.  🙂

    Last month, we asked Health Activists to share their experiences and tips for traveling.

    Here are a few of the excellent entries we received:

    Kelly (you may know her better as RA Warrior) shared her experiences driving to and from Mississippi last summer in her post, “Traveling with Chronic Illness/RA“. She talks about how traveling has changed since she was diagnosed, and wonders whether part of the reason we don’t see more people living with severe rheumatoid arthritis, “because people who are limited by RA don’t spend a lot of time traveling around in public places.” Be sure to check out Part 2 of her post, where she shares 20 fantastic travel tips for those living with chronic illnesses!
    In “Buckle Up, We’re Going on Vacation with Food Allergies“, Janeen describes how she prepares for family vacations – including everything from grocery lists to kitchen utensils necessary to prevent cross contamination. In addition to some tips about helpful online resources for finding food allergy friendly restaurants near your destination, there’s also a photograph of the final packing results that you won’t want to miss.
    Amy K‘s entry, “Health Activist, Will Travel” presents a different perspective on the challenges of being a Health Activist on the road: sometimes one’s health conditions can prevent travel altogether. Amy notes that, “a lot of people with health conditions and a lot of health activists just don’t have access to the funds or support they need to travel.” Be sure to check out the full post – there are some great travel suggestions in the comments section too!
    Just getting back from a trip of your own? It’s not too late to share your tips for traveling as a Health Activist with the WEGO Health Community! Take a minute to leave a comment on the discussion in our Health Bloggers Group.

    Many thanks to everyone who submitted entries for last month! We hope you’ll come back tomorrow to find out the topic for August’s Health Activist Blog Carnival.

    We’re very excited to announce a new feature of the WEGO Health Community today: The Health Activist Blog Carnival!

    New to the Blog Carnival Concept? Don’t worry, it’s easy!

    Each month, we’ll post a new theme for Health Activists to consider and write about. Once you’ve finished your post, you can submit it to the Blog Carnival by leaving a comment in our Health Bloggers Group. At the end of the month, we’ll feature a few of our favorite posts here on the WEGO Health Blog, and make sure everyone has a chance to read and review all the the entries.
    Why participate?

    The Blog Carnival is a great way to share your thoughts and ideas with other Health Activists – and a great way to reach more people! Plus, you’ll get to hear what other Health Activists think about each topic and get some food for thought each month.
    What’s this month’s theme?

    The theme for February is: Relationships and Chronic Illness

    Whether you want to write about your own experience, how you’ve handled this topic in your community, or something else entirely, the direct you take is completely up to you.
    Whatever you chose to write about, there are two things we ask that you do:
    1. Let others know that your post is for the Health Activist Blog Carnival by including the following text at the end of your post: “This post is my entry in February’s Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it here:
    2. Leave a comment on this discussion within the Health Bloggers Group with a link to your entry post. We hope you’ll visit the discussion thread often to check out the latest entries and learn what your fellow Health Activists have to say on the subject!
    That’s it!
    Use our theme as inspiration for a post on your WEGO Health Blog or your blog on another blogging platform (or both!) and let us know what you think about relationships and chronic illness – we’re looking forward to hearing your thoughts!