Over the years I have been asked all different types of questions about my diseases and absolutely nothing surprises me anymore! From the personal to the bizarre and everything in between. Nothing embarrasses me or shocks me anymore. I am actually quite surprised how calm and detached I can be at times as they can often be quite personal and challenging topics and conversations.
Having said that I don’t ever feel I owe anyone answers or insights into my personal life, so I always feel very comfortable in showing boundaries to various people as I feel they are warranted.
This is a right, and a skill that many autoimmune may have to develop over the years of illness. For example, some crohns sufferers who must wear a bag don’t feel comfortable at all in whipping out their bags for a curious enquirer, and yet some do. It’s entirely personal. Sometimes we forget we have the right to set boundaries we are comfortable with and that we should!
No one has a right to know everything that is happening to our health unless we choose. If people are committed to being suspicious and doubting then it is unlikely that anything you say will dissuade them of it. It’s not the sufferers job to try and change them and it may even cause us stress and fatigue.
I will often adjust what I tell to the person I am telling. A fellow sufferer is a different scenario to someone who I have just met in the street who casually looks at me and says “…so what’s wrong with you?” More often than not this is exactly the way I am questioned and it isn’t always said in a kind or respectful way. Since much of what is happening to my body is happening inside bones, muscles and nerves, people don’t see it and often they are curious, or suspicious, of what is happening to me, although I have to add here that it is entirely not their right to know, just as I don’t see what is happening in their private life or financial situation and it is not my right to know either!
Few people respect this logic when it comes to someone with an illness that they can’t see or a disease they don’t understand but they should and can.
I have developed a fairly good filter now so that I can generally tell within the first few seconds what I prefer to say and explain. The biggest factor in this decision can be explained like so…
…if someone asks me out of genuine interest, care, respect and a desire to understand something I will generally oblige them. But if I ever suspect that they are asking out of rudeness, interrogation, disinterest, malice or any other similar tone I will be quick to dismiss them in the manner they deserve without lowering my own personal standards. What most people (friends, strangers, physicians or relatives) don’t realize is that Autoimmunes can almost always tell the difference! We know when people care or empathize or not. Even when it comes to doctors and medical professionals! We can know exactly where their intentions lay and if it is worth our time and energy indulging them.
After nearly a decade of being diagnosed there are still some people who are friends or relatives that have either never bothered doing some investigation into my diseases on their own, and those who have. Those who haven’t even bothered looking up anything or trying to educate themselves in what is happening to me and my health I don’t disclose information to. Not at all. It clearly isn’t important enough to them so I am very careful about what I wish to share. For those who have expressed disrespect or suspicion I have even less time for them. It simply isn’t worth my precious time or emotions. To them I simply omit any and all details. I also pay them the same respect by not inquiring into their life or challenges as I believe relationships are two way streets. This seems like the appropriate balance and resolution to me. I simply wish them well and continue striving for the best life possible.
Since becoming an advocate I have opened up a great deal and put very private and personal information online to be shared with fellow fighters and anyone who has a genuine interest and respect for these painful, debilitating and global health issues. The fact that most people will know more about a celebrity’s dating habits or some rare and obscure diseases than autoimmune diseases, which affects more people than cancer, stroke and heart disease combined, is a complete anathema to me. My hope as an advocate has always been to educate and, hopefully, help improve research and treatments. That is my prime motivation of why I do what I do. It would be my dream if science were able to find cures in my lifetime, however in the meantime autoimmune fighters need the support and respect of the general public and those especially those who are closer to us.
It’s the least we should expect.