Thursday, August 30, 2012


“If others tell us something we make assumptions, and if they don't tell us something we make assumptions to fulfill our need to know and to replace the need to communicate. Even if we hear something and we don't understand we make assumptions about what it means and then believe the assumptions. We make all sorts of assumptions because we don't have the courage to ask questions.”  ~ Miguel Ruiz

One of the major pitfalls of having an invisible illness is that things do not always appear as they truly are. I mean me. And you. Or the cashier at the grocery store. Maybe even your lawyer, or doctor, or mechanic. The meaning of the term invisible illness is pretty self explanatory but in my case and for thousands like me who have Sjogren's syndrome, autoimmune illness, or any other type of chronic illness, having an invisible illness means we can look perfectly well on the outside and be suffering with a host of symptoms on the inside. Because of that, a lot of assumptions are made by other people about us, how we feel, and what we are capable of doing.

These assumptions that are made by people in society are not exclusive towards people who are ill. We make assumptions about people we encounter all the time as we go through our day. Some of us more than others. Myself included. Based on observations we have made, without knowing all the facts about a particular person or situation, we form opinions and accept some idea about a person as a fact. Oftentimes this is due to a lack of communication or because of our own preconceived notions and ideas about how people SHOULD act or behave. These facts that we develop in our mind are based on our own ideas and not necessarily based on the reality of the situation.

Invisible illness and chronic illness in general are catalysts for people making assumptions because of what others cannot see or understand. This notion affects me on a regular basis. I get stares or nasty looks from time to time from other people on the occasion where I use my handicap placard to park at a store on my bad days. Why? Because I am forty-one years old and I don't use a wheelchair, walker, or cane. Assumption made. I am abusing the system.

Or I am helping out a friend or acquaintance who is having a crisis. I may have to plan the rest of my entire week around doing this. Someone else observes me out and about and subsequently asks for my help with something that is not as critical. I have to say no because I have to oftentimes obsessively manage my energy and time. Assumption made. I do not care enough or I cannot be bothered.

Sometimes assumptions get made because of how we ourselves chose to deal with our illness or limitations. Typically, I am relatively candid in my blog about how illness has impacted my life, both in positive and negative ways. Overall, I try to keep the mood and context of my writing upbeat. This is not exclusive to the writing in my blog. I try to stay positive on my blog's Facebook page, in my conversations with other people, and in my overall attitude in dealing with this life changing illness.

People read upbeat things that I write or see me involved in activities and sometimes assume that I am a vision of perfect health. Well, OK maybe not perfect health, but you get the idea. She's happy, she must be doing very well they think. Sometimes they could not be further from the truth. And you know what? That is perfectly fine. I don't need the world to know every time I am not feeling well just like I don't know the details of every difficult issue that is going on in other people's lives. However, where it does become a problem is when people make these assumptions and do not understand why I have not been in touch or why I may need to say no to a project or cannot offer assistance. That is why I write entries like this. It is nobody's fault. People just don't realize.

Here's the thing. I do struggle. I struggle much more than I let on. I am not stating this because I want anyone to feel sorry for me; just the opposite. I don't always let on about how much I am struggling physically, or emotionally, with my illness because I am working on something that is very critical to the rest of my life right now.

I am trying to make sure that this illness does not define who I am as a person for the rest of my life.

This is a very hard thing to do when managing a chronic illness takes up so much of my daily life.

But I am so much more than my illness.

So I HAVE to stay positive because I strongly feel that on many days, attitude can be the difference between whether I am functioning or not. The difference between a life of fulfillment versus a life that feels like doom and gloom.

So no, I am not in denial about the impact of Sjogren's syndrome on my life. I am actually scared to death about my future. But I cannot sit around and dwell on it every single day and feel sorry for myself. I write about my illness a lot in my blog and am writing a book about Sjogren's because I feel that I have a lot to share that may be helpful to other people. Other than that, I try to choose sharing mostly the good and positive parts of my life with others. Like my writing. And my new nutrition/exercise plan. And my upcoming wedding. But it doesn't mean that one should make the assumption that while I am being positive, that I am not in the process of increasing my prednisone again, looking towards the likelihood of two minor eye surgeries, managing out of control pain and fatigue and doing all this and more while still trying to have a life. It doesn't mean I don't want to talk about my health, it just means that I don't want to have to explain away other people's assumptions all the time. I know, I know, I shouldn't care what other people think. I am working on that.

As I have written this, I am filing these thoughts away in the back of MY mind so that I can also be more conscious of the assumptions that I make about other people and their actions. Hopefully I can learn to be more understanding and remember to give someone a break. To not make assumptions.

Fair enough.

Photo Courtesy of Chuck Myers:


  1. It's like you took my thoughts, recently, and put them down in writing. Love it!! :o)

  2. Makes perfect sense! As I am reading the various blogs, I do wonder sometimes how the authors do it? I wonder if I really am worse off, or if there are big differences in severity or day to day flucuations in people's experiences with illness. Makes me, to some extent feel different - HOWEVER it also brightens my day and makes me feel as if I too, can do these things. That maybe life is not so bad...I appreciate that you take the time to do what you do and share your life with others...Makes me feel I can do it too...

  3. Shhh, I did it while you were sleeping! ;-)