Lupus, RA, And The ALS Ice Bucket Challenge

You know me.  When it comes to gimmicky advocacy efforts, I tend to be a curmudgeon. 

In the past, my major beef has been with the “Pinkification” efforts for breast cancer awareness that take place every October.

I’ve always felt that it is really dangerous when any one condition dominates the consciousness of the American public.   

To be honest, I’ve been really grateful that given what has been going on in my personal life, people have been considerate enough and no one has nominated me to do the ALS Ice Bucket Challenge, because I won’t do it, at least not right now. 

At first, I thought that the purpose of the Ice Bucket Challenge was to numb people in a way that mimics some of the symptoms of ALS.  But that doesn’t seem to be the case. 

I actually would understand it a little bit better if that was the goal of the challenge.  But it’s not.  The goal is to raise money and raise awareness.

On the money side, the Ice Bucket Challenge has prevailed.

In the awareness department, I’m not so sure.

Pouring a bucket of ice water over your head makes you uncomfortable for a few minutes, at most, but it doesn’t raise awareness about what it’s like to live with this devastating disease.   

While all measure of celebrities, and even the President of the United States, have videoed themselves taking part in the Ice Bucket Challenge, few of these videos provide any education whatsoever about what ALS is and how it impacts the patients who are diagnosed with the disease, and their families.  

It isn’t awareness, if, when you ask probably 99% of the people who have done the Ice Bucket Challenge what ALS is, they probably can’t tell you much more than the fact that it’s a fatal disease, if they can tell you that much.

Doctors are even warning against the challenge (http://www.forbes.com/sites/jvchamary/2014/08/25/ice-bucket-challenge/ and http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11294023). 

And I know that many people with RA involved in social media have questioned whether taking part in the challenge could have an adverse affect on their health and their joints. 

As it turns out, a recent e-mail in my inbox from the Arthritis Foundation was about Healing Hands For Arthritis.  On September 17, 2014, Massage Envy Spa will donate $10 from every massage and facial, and 10% of sales of select skincare products to the Arthritis Foundation (http://www.massageenvy.com/healing-hands-for-arthritis.aspx).

I some ways, I understand this a bit more than the Ice Bucket Challenge because many people with arthritis benefit from massage therapy.

However, if there is no educational component about arthritis provided along side the donations on September 17, then this too fails to really raise awareness.

I guess we have to ask ourselves what the goal of any advocacy and awareness campaign is.  Is it simply to raise funds, even when there isn’t a clear direction to where all of those funds will go?  Or is the goal to really raise awareness, not just imprint the name of a disease on the public consciousness? 

As of yesterday, since July 29, 2014, $94.3 million have been raised for ALS.  Last year, during the same period of time, only $2.4 million was raised (http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-082714.html).

So maybe for those of us who are skeptical, the joke’s on us. 

It’s great to give to charity.  But it’s not really a sustainable effort if people are giving blindly, and/or due to peer pressure. 

ALS is a horrible disease, and research efforts into finding a cure for this disease are extremely important and necessary.  But there’s also the fact that we need to share the wealth. 

I don’t mean that to sound selfish.  But there are many diseases out there, including Lupus and RA, that are really misunderstood by the general public, and even so by some doctors and some patients.  

So it’s great that ALS has finally had its 15 minutes (and $94.3 million worth) of fame. 

But before you dump a bucket of icy water over your head in the name of ALS, or any other disease for that matter, maybe you should think about it, rather than just doing it.

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.