We Are All Part of This Community, No Matter How We Are Doing (RD Blog Week #4)

As of late, I haven’t been blogging. It’s not so much that I haven’t had things to say as much as it has been a struggle about whether or not I should say it. I hesitate to express feelings I’ve held for quite some time. But, here goes…

I have made great friends through social media, blogging, and the chronic illness community, and I am forever grateful for that. However, I feel like so often it turns into a competition of who has it worse.

So, when I’ve been doing relatively well, I hesitate to share it. In the last two years, I’ve bought a house, gotten engaged, and gotten married. And while I know that the friends I’ve made through this community are happy for me, it’s hard to confront the larger community when so many others are struggling.

And it’s not that I don’t struggle with lupus and RA. I definitely do. It’s just that the suffering is no longer constant for me.

I’ve wanted to share everything that’s been happening, both the good and the bad, but it’s hard. It’s hard when you’re happy and want to celebrate it. It’s easier to rail against the bad stuff – medications not working, doctors not listening, struggling to stay above water when you feel like everything is closing in around you – because you know that others can relate. You’ve heard it all before, over and over again. You hear less of the good things.   

And it diminishes everyone to not allow the sun to shine through the clouds. It diminishes all of us, because we are not just these illnesses. We are wives, husbands, sisters, brothers, daughters, sons, friends, and so much more.

We are who we are, and we should never have to apologize for that, or fear that having a good day and sharing that, is going to anger those who aren’t in the same place.

I think that as a community, in order to be cohesive, we need to celebrate our triumphs and our tragedies, our highs along and our lows, whether medical or otherwise. We need to support each other, not tear each other down.

It starts with a simple question: How are you? That’s pretty basic, right? But what’s not so basic is to actually listen to the answer to the question, and to enthusiastically respond, regardless of what the other person’s response is. If someone’s doing well, be their cheerleader. If someone’s struggling, encourage them.

We’re stronger together. We’re stronger when we display a unified front, when we fight as sisters and brothers in the struggle, no matter what stage of disease we are in. We must acknowledge our shared experience. Our shared experience is what brought us together in the first place, and our shared experience is what will keep the community going.

In a world filled with so much divisiveness and strife, we need to be part of the solution rather than part of the problem.

The sooner we stop fighting with each other, and start fighting for each other, the better off we will be.

The RA Community Is Big Enough For All Of Us

I recently posted the story about the death of 41-year-old reporter Emma Suddaby from RA.  The article has been making the rounds on social media that is related to the RA community. 

One of my Facebook friends, someone I went to elementary school with, but haven’t seen or talked to in person for probably 20 years, posted the following comment to the link on my Facebook page:

“I've had RA since I was 14 and have never heard of anyone dying because of it.  I get the infection risk, but this is an incredibly rare situation.  I'm sorry to hear she struggled so much and was in such discomfort.”

I never knew this person had RA, as by the time she was diagnosed, we were no longer in contact.  Even so, we have been Facebook friends for many years, and I still never had any inkling that we had this disease in common. 

This comment really horrified me.

To me, this comment reads more like it comes from someone who doesn’t have this disease and doesn’t believe it can be this bad, rather than coming from someone who is part of this community. 

To be honest, I am not really sure the purpose that this person’s comment serves, other than adding more fuel to my fire.  Or as a public declaration that this person has RA but it doesn’t really impact their life. 

But it doesn’t read to me as being realistic, and almost comes off as self-hating, or at the very least, in denial about the severity of this disease. 

There is already enough stigma surrounding this disease, especially when you are a young person, so to hear someone in our own community making comments like that is simply deplorable. 

Although while I am including this person in the RA community, it’s not clear whether or not she would consider herself to be a member.

I am taken back to a moment after I was first diagnosed, when I was receiving steroid infusions.  I was trying to get the nurse’s attention to make sure it was okay to listen to headphones.  I couldn’t get her attention, but the girl next to me, who was clearly receiving chemo, told me to go ahead, “You do what you have to do to get through it.”

I was so struck by that, because here she was, receiving chemo, and giving me advice, and making me feel like I was a member of the club.  And we didn’t have the same disease.  So if we can make connections like that with other people who don’t have our same illnesses, think about the relationships we can build with others who have RA.

But solid relationships won’t be built on comments like the one posted to my Facebook page.

The reality is, the RA community is big enough for all of us.    

If we all had RA super severe, we wouldn’t be able to help each other or offer each other hope, and if we all had RA super mild, we wouldn’t need each other.

To be honest, there are times when I’m doing relatively well that I don’t feel like I belong to this community.  But it’s not because people are unwelcoming.  It’s my own insecurities.

I know that I am doing a lot better than some people with RA.  But that’s never seemed to matter in terms of being considered a part of the group and vital member of this community.  And I am so grateful for that.     

This isn’t the first death I’ve heard of at the hands of RA, and unfortunately, it certainly won’t be the last.

When someone in our community dies, it should serve as a call to action.  It should make us more determined than ever to find new treatments and cures. 

It shouldn’t be used as an opportunity to create fractures and friction in the community.  It shouldn’t make us weaker, but it should make us stronger by bringing us together. 

What Rheumatoid Awareness Means To Me

February 2^nd is Rheumatoid Awareness Day.  And RA Warrior Kelly poses the question What Would Rheumatoid Awareness Mean?   So this post is part of the #Rheum Blog Carnival answering the previous question. 

So what does rheumatoid awareness mean to me? 

It means that the world recognizes that rheumatoid arthritis, in particular, and rheumatoid disease, in general, isn’t just something that happens to old people.  It happens to infants, children, teens, young adults, and middle aged people. 

It means that when someone gets diagnosed, they’ve heard about the disease enough to know what it is, what they are getting into, and they don’t have to leave the doctor’s office completely dumbfounded, and go home and look it up on the Internet because they’ve never heard of it before.

It means that it’s no longer an invisible illness.  It’s no longer something that we have to be ashamed of, that we hide in the shadows because of.  It becomes a badge of honor and almost a sense of pride, but not derision or shame. 

It means that people realize the legions of us that are out there, and they understand that we are a force to be reckoned with, both in-person and online. 

It means that in spite of our illness or despite it, many of us are making it our mission in life to raise awareness because it’s extremely important work that desperately needs to be done. 

It means that we are no longer alone in this fight.  That anyone marginally connected to this illness become involved in raising awareness – that means the families and friends of patients, doctors, nurses, other medical and health professionals, and anyone else who has been touched or knows someone who has been touched by this illness. 

It means that research keeps being done, and new drugs come through the pipeline, offering us hope, despite our pain.

It means that you can mention your illness to anyone, and they will know what you are talking about.  They won’t ask “if it’s contagious”, or say “but you don’t look sick”, or tell you that “their grandmother has it”, or say that you’re “too young”, or any of the other completely stupid and offensive things that people tend to say.

It means I can talk openly and honestly with people about my illness and not worry that they are judging me or adjusting their expectations to fit a box that might not be accurate.

It means that I won’t have to worry that my future children will develop lupus or RA or some other illness because we will know the cause, and maybe, one day, we will even have a cure. 

It means that this is only the beginning.

Reflections On The 1st Rheumatoid Arthritis Blogger Summit*

Last week, I had the privilege of attending the 1^st Rheumatoid Arthritis Blogger Summit held by Pfizer in New York. 

When I got the invite, I was super excited and surprised to be included.  It was really an honor!  And I’m not going to lie, being treated like a queen for a day was nice, too!    

I was a bit worried about a hidden agenda, but the day opened by us being told that Pfizer was not going to discuss any of their medications.  Honestly, this impressed me.  And it put me at ease that I wouldn’t feel like I had to write about a product that I haven’t been on, because in general, I usually don’t really discuss medications that I, myself, haven’t been on, unless there is news that I feel is really important for my readers.

We did learn, however, about an unbranded campaign that Pfizer is rolling out, Rethink RA.  Unbranded means that the campaign is not connected specifically to any drugs produced by Pfizer.  In other words, this program is designed to show Pfizer’s commitment to the RA community, in general, and not just patients that are on their medications.    

You can check out the website, http://www.rethinkra.com/.  And the (free) kit that you can order has a lot of handy tools in it for helping you start or continue a conversation with your rheumatologist.  Hopefully this campaign will continue to evolve!  

Rethink RA Kit

 I think it is hugely important for there to be an open line of communication between patients and pharmaceutical companies.  I think a lot of times it can seem like the pharmaceutical companies are untouchable, and there are also a lot of people that tend to stand between the patient and pharmaceutical companies.  It was nice to be able to share my opinions and experiences as an RA patient directly, and I hope that Pfizer was receptive to that.

We ate lunch at Haven’s Kitchen, with a meal prepared by Seamus Mullen.  Seamus is a chef – owner of Tertulia restaurant in New York and author of the cookbook, “Seamus Mullen’s Hero Food: How Cooking with Delicious Things Can Make Us Feel Better” – and he has RA.  He taught us some of his tricks in the kitchen that he uses to make cooking more RA-friendly, and made us a delicious meal of cucumber gazpacho, raw kale salad, curried chicken (tofu for me) and ginger rice, and almond cake.  Seamus is going to serve as the spokesperson for the Rethink RA campaign.  The meal was delicious, although it put us all into a bit of a food coma for our afternoon sessions with Pfizer. 

Fellow attendees were Britt Johnson (The Hurt Blogger), Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Marianna Paulson (A Rheumful of Tips), Shannon Ragland (representing the Rheumatoid Patient Foundation), Dana Symons (at the Water’s Edge), and also included two of my fellow HealthCentral RA bloggers, Lisa Emrich (Brass and Ivory: Life with MS & RA) and Cathy Kramer (The Life and Adventures of Cateepoo).

Our program for the day

I have to say, it was comforting to be around others who were totally stiff, standing up at the end of lunch and were also battling RA and the humidity.  By the end of the day, my lupus was having a field day with all the fluorescent lighting.  I had a headache and went back to the hotel to lie down, but was able to rally for dinner with a few of the bloggers.  They checked out Time Square afterwards – I went back to my room to prepare for my 9 a.m. flight - since I’m moving to New York in a few months, anyway.

The highlight of the day was getting to spend time with my fellow bloggers, because it is so rare to be in the company of people who get it.  That was really awesome!  It was nice to share our stories and not have to provide cliffs notes about everything.  I’m grateful for the connections I made with the other bloggers.  So thanks to Pfizer for bringing us together. 

I hate to admit that I am still recovering, but flying to New York on Thursday night, having the summit and then hanging out with the other bloggers all day Friday, and flying back to Michigan Saturday morning was a bit much for me, but totally worth it!  

In some ways, this experience made me realize the intricacies of this disease.  The need for rest, healthy food, exercise, and sticking to your medication regimen.  It also made me realize that communication needs to occur on various fronts – with you and your doctor, with you and your friends and family, with you and your community of support, and with you and others involved in the illness experience, such as the pharmaceutical companies.  This experience also helped to underscore the complicated nature of the healthcare system, and what pharmaceutical companies can and cannot do.

I hope to be included in more things like this in the future!  What a great opportunity, interacting with a pharmaceutical company, and getting to meet other RA bloggers!

*In the effort of full disclosure, my travel and lodging were paid for by Pfizer/TwistMedia.  However, it was my choice to write about the experience.

These Chronic Bitches Be Crazy (And The Healthy Ones Too)…*

There’s a rant I’ve been meaning to post for a long time.  It was in response to a completely awful comment that had been posted on a fellow blogger’s site.  But, for whatever reason, I never posted it.  So I’m going to go off on that rant, and then explain why it is particularly salient to me right now.

The comment was from a healthy person, which basically suggested that if the chronically ill person would just shut up and stop complaining, they would be cured.

We’ve all had our fair share of people who won’t believe everything we write, will offer snake oil cures, or will go as far as to say that our illnesses are created in our minds.  There are healthy people who will tell us to get over ourselves or offer advice when they really have no place in the conversation in the first place. 

But by virtue of blogging, we put it out there, and we run the risk of people reading it who just can’t possibly understand. 

You know, I’m the first to admit that I don’t always take stellar care of myself.  My diet isn’t always as balanced as it should be.  And there a host of other things.  But the bottom line is, the things that I could do better are not killing me. 

Self-blame is NOT the answer people.  I didn’t get lupus because I’m a bad person or because I did something to deserve it.  It happens.  Shit happens.  Things happen that we can’t explain or understand, but we have to deal with as best we can.  We have to go on living.

And these naysayers suggest that if we stopped being so self-absorbed, we’d be cured.  Yeah.  Uh huh.  Because so many of the chronically ill people I know love to wallow in self-pity.  NOT!

In my dreams, if I could be sick or healthy, of course I’d be healthy.  But if I was healthy, I’m not sure I’d be as compassionate and empathetic as I am (this post notwithstanding).

Seriously.  Go F*** Yourself.  

And when you get sick, and feel like shit physically and emotionally, don’t come crying to me. 

And when you get sick, it’s going to have nothing to do with being faint of character, right?  When it comes to you, it’s merely that the universe conspired against you.  Funny how that works.

I feel terrible for people like this because they are so ridiculously out of touch with reality.  They are the ones that have problems.  Not us.  One day they’ll be faced with something they never imagined, and they’ll shit their pants trying to figure out what to do about it. 

I have to believe these people weren’t born moronic.  They became it.  And then decided to pepper the world with their unwanted and unwarranted opinions.   

In fact, I think we chronically ill folk appreciate the hell out of life.  We don’t take the good days for granted.

And wow, what a wonderful life you live indeed when you have time to spew this crap. 

And I know, this is a bit the pot calling the kettle because I’m stooping to their level when I shouldn’t even engage.  But it’s hard not to.  And it’s not just for me.  It’s for all of my chronically ill blogger friends, because I know that none of us are immune to these kinds of people.

You know, a truly happy person wouldn’t take other people down.  Don’t they realize that their ignorance runs deep, and the things they say hurt and offend? 

However, I’ve discovered recently that there’s something worse than these idiots that read our blogs once and offer an opinion based on nothing more than their ignorant thoughts.  It’s mudslinging that comes from another chronically ill blogger.  In some ways, this is harder, I think, to take, than the crap that comes from the healthy, “well-meaning morons.” 

This is because they aren’t in our shoes and they can’t imagine being in our shoes and could never understand in less they were in our shoes.  And let’s be honest.  Most of us don’t wish illness on anyone. 

So when one chronically ill blogger rags on another one for seemingly no reason, it hurts a lot of us. 

And I’ll admit.  I’m a bit biased.  I really like ChronicBabe.  I’ve met Jenni in-person and she’s super cool. 

I’m not going to explicitly call the other person out here.  But I’ll link to Jenni’s response, and you can get the skinny on the situation (Are the qualities of a ChronicMom and of a ChronicBABE mutually exclusive?).  Or not.  It’s really not 100% important exactly what was said.  It’s what it intimated.  Basically the gist is that chronically ill moms are on a totally different level than chronically ill non-moms.

One thing that I find totally ridiculous about this comment is the fact that many women in our community want to have children and can’t, or struggle with trying to balance health and getting pregnant.  So what if ChronicBabe isn’t childless by choice?  And what if she is?  Basically this means that chronically ill women with children have it harder than chronically ill women without children.  This seems like faulty logic to me. 

As chronically ill women, we have shared experiences, regardless of illness type.  And it’s true that chronically ill moms may have unique challenges that women without children don’t have.  But I don’t think that chronically ill moms necessarily have it harder or worse than non-moms.  I think it’s a mistake to factionalize our community in this way.  It’s concerning to me.   

It’s one thing when there are rifts between chronically ill bloggers and the well-meaning, but ignorant, healthy people.  But it’s another for there to be rifts between one chronically ill blogger and another.

You know, I’m a student, and I think it would be easy to think that my life as a chronically ill person is more difficult than someone who is not a student.  But I can’t say that.  There is absolutely nothing based in reality that makes it so.

So why this need to compare suffering?  Why try and push the agenda that one person has it harder than the other?  I read a lot of blogs by people with chronic illnesses that have a wide range of conditions; diabetes, cystic fibrosis, cancer, colitis, and the list goes on and on.  I am sure there are some people who may feel that they have it harder.  Maybe they are terminal.  But whatever the case may be, more often than not, I find that what connects us is what we have in common rather than our differences. 

I’ve shared this story several times, but it’s something I’ll never forget, and seems appropriate once again.  I was getting steroid infusions and the girl next to me, who was maybe a few years older than me, was getting chemo.  I was new to the infusion room, so I didn’t know all the rules, and was trying to ask the nurse if it was okay for me to listen to my IPod.  The nurse didn’t hear me, but the girl next to me did.  And she said 10 words to me that I will always remember: “You do whatever you need to do to get through it.”  I looked at her, and thought, this girl has cancer, and she’s cheering me on.  But in that moment, in that infusion room, we were equals.  It didn’t matter what diseases we had or what was being pumped into us. 

And right around that same time, I started my blog.  And this is why I blog.  This is what keeps me writing.  It’s the experiences I shared with all of you, and you’ve shared with me.  It’s the encouragement that I receive, and hope that I offer to others.  It’s not the mudslinging.  It’s not the mean and negative comments by healthy people.  It’s everyone reading this right now, and those who have read my blog in the past, and those who will read my blog in the future.   

I know people won’t always agree with me, and that’s fine.  But I hope that the ties that bind us are stronger than the ones that don’t.   

When a healthy person attacks someone in our community, we spring into action.  We take the offending person to task, and we comfort the offended.  And I think the same rules apply when there is negative chronic-on-chronic action.  So I’m standing up for my friend, and hopefully for most chronic chicks out there when I say that we should celebrate our similarities, and acknowledge, but nicely, our differences.  A plurality of opinions in this community is important, as long as they remain respectful to others.  Words hurt.  But so does the absence of action.    

I guess the other thing is that as chronically ill people, we don’t have the market cornered on suffering.  A hurricane just pounded the East Coast.  Some people lost everything.  Illness isn’t the only bad thing that can happen in life.  I guess there is the old adage, “At least you have your health.”  But that’s really no consolation to those of us that don’t.  But the reality is, if we can’t relate to other chronically ill people, who can we relate to?          

* So I’d like to clarify, in case you had concerns, that this title is rather tongue-in-cheek.