Another rant about invisible illness and those who judge: Those closest

In my last post, I briefly talked about how to better cope with an invisible condition when those around you may be unsupportive. As this seems to be a relatively significant problem for most patients within this scenario, I thought it might be worth revisiting the topic. Also, as human beings we are inextricably linked to our current state of emotions, and such regular encouraging affirmations will hopefully help us deal with these constant battles. Hopefully, in time our responses to such negative behavior will enable us to step back from the situation instead of resorting to the typical approach of doubting ourselves or feeling frustrated.

Just to recap, an invisible illness is one where others are unable to detect any form of disease or disability, despite the fact that someone may be very sick. Indeed, people often tell me that I look well, and I suppose my upbeat personality would also likely reinforce this misapprehension to those who don’t really understand. Conversely, a visible condition can often be identified by supportive apparatus, body appearance and also by behavior. Like many others with an invisible illness, I don’t possess a wheelchair or have a limp, I don’t moan about my daily discomforts, and there are no other apparent deformities that one can observe from just looking at me.  Indeed, I actually look the picture of perfect health! I wish that were only true. If I had the choice of picking a visible illness, would I change? To be quite honest, I don’t really know. On the one hand, others seem to comprehend issues better when they observe things visually.  However, in our culture, people can be just as cruel about disfigurement or abnormalities.  It can sometimes be a quandary as to whether to purposely demonstrate how poorly you feel to others in order to get them to acknowledge your medical problems. How much do you disclose to others? Do you start using a cane or sidestep the issue and be misunderstood? It is important to get others to recognize your situation but this tilts the scale for being able to fit in and to remain inconspicuous. I suppose the choice is a personal one. In the scientific community, the term “suck it and see” is often used, which basically means just try each step and see how it works for you.

Prior to my chronic and debilitating illness, I was extremely fit and energetic: I walked eight miles a day, enjoyed a fulfilling and rewarding career that entailed global travel, and I also benefited from a wonderful social life and happy marriage. I seemed to have it all. When I became ill, everything changed, of course. Throughout my journey, I have encountered positive and supportive individuals, but like many of you I have not been immune to the occasional rudeness from others who don’t understand. Indeed, even after being diagnosed with a particular condition from a Board Certified MD, one (non medical) individual retorted by saying, “Don’t be silly, you haven’t got that!” In fact, this is not the first time I have received such a response and I’m sure that many of you have experienced similar circumstances. This can be a very challenging situation to deal with, especially when that person may be a close friend or family member.  It seems quite bizarre to me that someone could witness a person’s whole transformation from a vibrant and dynamic existence to one that is practically housebound and screaming out for help, and yet they choose to define such a change as psychosomatic. However, just as it is for those who judge us, it is not pertinent for me to judge others, so I will say little more.  All I can articulate is that nobody should feel discouraged by the shortcomings of others or let such behaviors negatively affect one’s overall well being. After all, most people’s understanding of illness is generally based on acute conditions, such as a broken leg or a bad cold, where patients remain inactive for a period of time while they are recovering. After this anticipated healing time, they are expected to resume normal activities to levels prior to when the sickness began.  However, someone with a chronic condition that has limited capacity instead of being totally bedridden is not so clearly defined. Further, after some time, when unable to return to a fully productive state, a chronically ill person with an invisible illness is often misunderstood as being lazy or of weak character, or perhaps that they are exaggerating the situation in order to seek attention or glean insurance benefits. The normal expectation within our society is that if you are seen to look healthy and to be functioning ok then you must be so all the time. Unless they live with you, they are unable to understand the constant fluctuations in your symptoms. If you applied the philosophy of resting in bed until you felt better, as a chronically ill person you will likely never get out of bed at all! This would not be beneficial as not only will you miss out on life, limiting yourself may lead to even lower function and more disability. It’s important, therefore, to participate in certain activities when you feel up to it but not to overdo things. It would be prudent to seek the advice of a medical professional to determine which levels of exertion may be suitable for your particular case.

Although it is not possible to completely eradicate the disapproving responses encountered from others from time to time, I have endeavored to list a few basic coping tips in the hope that they may at least soften the blow.  Please feel free to comment or let me know if you have any other strategies that you find are particularly helpful to you. Thank you.

Some Basic Coping Tips:

• Write out a list of names of those people you have regular contact with and make a note of those whose relationships you enjoy the most – Spend more time with these people!
• Join a support group so that you are able to communicate with fellow sufferers who have a better understanding of what you are going through.
• Be your own advocate and read about your condition, and share your findings with those around you so that they will have an increased awareness.
• If someone insults you, think about where that opinion is coming from. Is this person worth justifying yourself to by providing relevant facts, or would you be better off by just letting it go so that you can prioritize on more important issues?
• No matter what anyone says to you, believe in yourself and try to remain positive. Do not let others’ negative opinions impact your quality of life.
• Spend more time doing what you love… This will give you a positive focus and will help distract you from others’ negativity. If you don’t know where your passion lies, try taking up a new hobby – Remember the term “Suck it and See”.

RESOURCES:

The invisible Disabilities Advocate - http://www.invisibledisabilities.org/

30 Things about My Invisible Illness you May Not Know – A useful template that you can complete and send to others, or paste it on Facebook or your weblog - http://invisibleillnessweek.com/?p=2301