If I had a dollar for every time someone has asked me that over the past decade or more I am sure to have been a multimillionaire by now. But it strikes me as odd that I still don’t know how to respond, so I usually don’t.
If I do respond it is always in an arbitrary way which has nothing to do with the realities of how my health it is. It has become instinctual to say “fine, thanks” and then move on.
Unless I am speaking to either my specialists or someone whom I know is invested in the realities of my day to day battles with my health than I will never really answer this question with any details whatsoever. To everyone else they will get the same response. Always.
I have wondered how other people battling autoimmune diseases answer this question. Do they go into details? Do they share their day to day struggles? Or do they simply try to smile and say something more prefunct?
I really don’t see any point in going to any details of my life or my health battles with most people, regardless of who they are. They may be curious, mildly interested or simply being polite. Either way I am not inclined to share the constant struggles that have become my day to say life. I don’t feel like it can be, or should be, a trivial topic meant to pass the time when it has such a huge impact on my existence.
So I don’t share. Ever.
Most people are simply unaware of the huge complexity to such a question because they have no idea of the level of difficulty (and pain) that one thing can cause. like asking a cosmetologist “what is space like?” The answer is that it is mind blowingly. More than most people can possibly comprehend.
Depending on who the person is, the way in which they ask, the level of confidence we share, their real reasons for asking, why they are asking and a whole range of other factors, the result is that I rarely ever share a single detail.
I have decided that unless the person can or will be part of the REAL support needed in the help and coping of my autoimmune realities than I would rather not let them into my world. Even if they are being “well meaning”.
REAL support for me is being there when I need assistance, offering hands on help, offering the deeper emotional support that I need to get by, being a part of my reality and someone who I can really turn to and rely upon. If you fall outside of this than you will get the same walls everyone gets as they are so important to me being able to get through this life.
I don’t share my struggles for entertainment, gossip, small talk, pity, self indulgence, curiosity or any other superficial reason. I prefer not to talk about my health than to talk lightly about it. So I don’t.
The great many people will seem to ask me “how are you?” In an almost dismissive way and so I answer them in the same way. I am sure we all do this within our social norms. I don’t mind at all. I don’t even think about it again. It’s customary for people to ask, smile, and say “fine, thanks” to such a question and I am not breaking any tradition with my responses.
Nowadays if you are not part of my day to day, hands on support/management plan then you are not the person I will ever share how I am truly feeling or what I am going through. Sadly this means that those autoimmunes which have real battles to face are often alone in them and hurting. It’s a thing we have all had to try and accept and is part of our shared experience.
Another factor is that my physical status and my emotional status can vary and diverge. For example, “how are you feeling?” Could be asked by someone trying to find out how I am feeling within myself on an emotional level and often I can distract myself, focus myself and hold fast even when my body is raging. How should I answer during these times? Again, I choose not to.
To the casual reader my piece may seem cold, detached, sterile or even sad but I assure you it isn’t. Like most of my life now, I have had to take a very honest, impartial and neutral position so that I can best cope, comprehend and respond to all that is going on. It is my hope that I have been able to better explain to the large number of people who have asked me over the years “how do you feel?” how exactly I FEEL about rheir questions and I hope to connect with other chronic/ disabled people who may better understand what I have written.
I recently had an OT visit my house and because she knew first hand of what I may have to go through she knew there was no need for the question abs so she just smiled and “how can I help?..” people who truly understand know exactly how we may be feeling and they are the only ones that I will ever answer that question for…