An Opportunity for Advocacy

Thank you, everyone, for your responses and support following my interesting exchange with an employee of my gym. Terese, also a member of the community center, copied a section of my blog post and sent it along to the manager; which resulted in him requesting to contact me since he was very concerned about the behavior of his staff:

 "....I appreciate you sharing this information with us which is completely inappropriate. I would like to work with staff to immediately address this serious issue."

I was impressed. So I sent him an email. Here's part of my letter:

......I'd like to point out as I did in my blog post that after several years of membership, I have never before experienced any negative feedback whatsoever from any of your staff; so the incident in question must be extremely rare. I did speak to the person, and I think that she recognized her mistake once I briefly explained my autoimmune disease to her.  

In view of this, I would prefer that instead of focus on the poor choice that she made; that perhaps some education of your staff/volunteers is in order regarding chronic invisible illnesses such as lupus and Sjogren's syndrome; both of which I deal with every day. It's almost impossible for your staff to identify us: there's a reason that our diseases are labeled as "invisible", since aside from being overweight or occasionally having skin lesions from lupus, I appear to be relatively healthy. But I'm not. The result of autoimmune disease can be completely disabling.  

For many of us, these diseases sap enormous amounts of energy, which makes exercise very difficult. During flares of my disease, I may only have enough energy to shower and dress then rest for the duration of the day. But exercise is vitally important regardless of how crummy I feel to avoid further deconditioning of my body and atrophy of my muscles. So even though I may only be able to pedal the recumbent exercise bike for ten minutes at a time, this may be the most important ten minutes of my day.  

I'd like to recommend a few sources of information for you regarding autoimmune diseases that you may want to pass along to any of your staff that is interested in learning more:

• This explanation of Sjogren's ("show-grins") Syndrome found on the Sjogren's Syndrome Foundation website.

• This overview of autoimmune disease from the National Institutes of Health. 

• This information regarding the surprising rise in incidence of autoimmune disease from the American Autoimmune Related Disease Association.

There are many other good sources of information; these are just a starting point. 

You'll notice that incidence of these diseases which may cause extreme exercise intolerance is on the rise. This is a very difficult issue for patients to address, and I believe that developing a group of staff members who have some familiarity with these types of conditions should be one of your priorities in meeting our community's needs; since finding that correct balance between "enough" and "too much" exercise is critical. Too little and energy supplies continue to dwindle; too much and the person may have a serious increase in their disease activity literally putting them on bed rest for a period of time. Patients like me often become frustrated and disheartened as they struggle to do small bits of exercise and see others much older or having what appears to be more serious medical conditions able to do far more than they can. I and people like me need all the positive reinforcement that we can get to motivate us to continue.....

Isn't it interesting that a crankiness-inducing conversation resulted in an opportunity to do some serious advocacy work for autoimmune disease?