To Tell The Truth…
A topic that I have always found interesting with regard to RA is if, when, and to whom do I share the details of my health situation with regard to RA?
I think this is a totally personal decision and one that each of us has to come to terms with, understanding that the answer may change over time. As you progress down the thorny and unpredictable path of RA, not only may you want to share, but you may need to share since it could impact your work, social life and other commitments and obligations. There are a variety of reasons behind your decision and I would suggest that at some point, you reflect on these so you are satisfied with your choice.
Consider that you may be afraid that people will treat you differently when they hear about RA and the details that surround it and so that may be holding you back from sharing. I remember having that concern but truthfully the way you handle the “telling” and how you function day to day will really set the tone for how folks treat you. I try to explain right from the get go that RA will not rule my life and that I am working to manage it and control it and that with today’s modern treatment options I plan to do just fine. That sets the tone for how I expect to be treated and puts peoples minds to rest. I think it is fine to just come right out and say, “please do not treat me like an invalid. I will let you know when I need additional assistance. I do want you to know that this disease does mean that I will have to make some changes in my life but I will keep you posted and up to date on what they are and how I am doing.” Simple, to the point and direct. Now, obviously this is not necessary with just anyone you meet and so you need to tailor what you say and how much you share in terms of detail.
I know many folks are concerned that sharing in their work environment could impact their job status, insurance, etc. and so they choose to remain silent. I am fortunate not to have that issue so my decision was not effected by that reality. I very well may have chosen not to share either if that had been my situation. Depending on your job situation, these issues need to be considered before you decide what to reveal.
Studies have shown that keeping your RA a secret can negatively impact your mental well-being and that is certainly true for me. I found it liberating to get it “all on the table” and not have to try to recall if this person or that one knew about the RA. On the other hand, some people really want and need their privacy and I believe actually do better psychologically controlling who and how much they share. Some folks just don’t think it is anyone else’s business and they prefer to keep their personal medical history to themselves. Then there are the folks who say that if someone asked they would share but they feel no need to go out of their way to offer the information. I say do what makes you comfortable! That really is the key. If you find you are content and satisfied with your decision then in my book that is what matters.
One of the decision makers may be how severe your RA is. For some folks social and business expectations like hand shaking is excruciating so you may have no choice. On the flip side, if your symptoms are pretty well under control you may find it works better for you to not share.
The fear of being discriminated against socially and/or professionally often rules the decision. The truth is not everyone deals with hearing about RA the same way. People may suddenly exclude you from social gatherings or professional advancement and that is certainly worth consideration.
One thing I do try to do almost all the time is EDUCATE! Most folks simply do not know what Rheumatoid Arthritis IS and how it differs from other forms of arthritis, its autoimmune nature, etc. I almost believe it is an obligation to share this so that people understand the reality of RA. They say knowledge is power and if we are to make progress with research and treatment then we need to raise awareness. Who knows who you may reach with your explanation? -a congressperson, a scientist, a foundation officer, etc. any of whom may well be able to effect change through legislation, research or funding!
In the end, the decision to share of not becomes yet another aspect of RA that each of us must “manage”.