Invisible illness: Those who judge

There are many chronic illnesses that appear to be unobvious to those looking from the outside, and some individuals are under the impression that if you don’t look sick then you certainly can’t be sick – Surely your problems are psychological and must be caused by depression, hypercondria or even worse… just plain laziness! This is especially true if one is unable to back up one’s lengthy symptom list with some tangible lab evidence. Contrary to what most people believe, it is sometimes tricky to obtain a definitive diagnoses for some circumstances. Indeed, I once experienced a situation where doctors couldn’t agree on whether or not I actually had cancer. On another instance, they were unable to elucidate why I went into serious adrenal dysfunction. Many years later, these episodes (as well as countless others) have merely retreated into the abyss of my meager memory, with no apparent clarification or remedy in sight. Doctors simply don’t understand what the cause could be, and the medical profession clearly remains inept at observing the body holistically. Meanwhile, I continue to take my roller coaster ride of ups and downs, reflecting times of optimism that is ultimately followed by defeat and disillusionment, and the lingering question of whether I will ever feel “normal” again.

Invisible ailments include such illnesses as Chronic Fatigue Syndrome (CFS/ME), some pituitary diseases, autoimmune disorders, heart disease and even cancer, although this list is far from exhaustive, and I’m sure that many of you will be happy to tell me about your particular situation or ailment. I’m also in no doubt that a number of you will have experienced some negativity or perhaps dismissiveness from some individuals (whether doctors, family or friends), which will undoubtedly cause much frustration and anger. This is a natural human response to situations that seem to be out of our control. Indeed, if we didn’t feel irritated or upset with such a set of circumstances then there would be something wrong! It is my experience that many people who do not have an invisible illness will not fully understand, no matter what or how many times you try to explain it to them. In fact there’s a useful saying in Israel that sums this up: “Let a man shave his own beard”. Some guides have, however, been written on how to communicate such information effectively (I am unable to comment on the efficacy of such material) and you might want to experiment with it to see if it helps (see IDA link for further information).

I try to manage my reaction to such disapproving people by telling myself that I know who I am as a person, and I understand my physical limitations. People may decide for themselves that I look sufficiently well to host the perfect dinner party, but the reality is that if I do too much then “payback is a вiŧ©ħ!” or in more refined vocabulary, I will experience what is generally referred to as “post-exertional malaise”. I have noticed through the years, that many people appear to be on what I term as the “conveyer belt of life” and, as a consequence, often end up being stuck in a rut. I’m certainly not saying that I’m glad to have this awful sickness or indeed would wish it upon anyone else (well, maybe for a week or so, so that they could truly experience and empathize with it!) However, I will say that it has really enabled me to grow in such a way that would not have been possible otherwise. In my prior life (i.e., before the illness), I was a workaholic and was always worried about what everyone else thought about me. As a consequence, I almost drove myself around the bend, continually trying to please others, and as a result, I was repeatedly abused and unappreciated. As my health progressively declined (if that makes sense), I realized enough was enough.

As a chronically ill patient, your priority is to take very good care of yourself, and if someone doesn’t understand that then they are really not worth bothering with – Especially if they are inclined to harmfully judge you. Nowadays, I try to limit my exposure to damaging relationships. I literally wrote out a list of names of those people I had contact with on a regular basis. (This list included face-to-face contacts, phone, calls, emails, text messages, and anything else). I then placed a tick mark next to those whose relationship I had enjoyed, and a cross mark adjacent to those who made me feel bad about myself. I then proceeded to eliminate the harmful ones from my life, and to spend more time with those whose company I took pleasure in. This has worked well for the most part – Obviously, it is not always possible to remove them all, due to certain responsibilities and so forth. Some family and work relationships could certainly pose problems, as it’s not always viable to just ignore them. However, it can be better to even avoid family ties if they become detrimental to your well-being.

On occasions when forced into a negative setting, try to take stock and “step out of the situation”. I know that sounds rather whimsical, but if you can, try to see the bigger picture and to acknowledge THEIR limitations, NOT yours. You are in charge of your own feelings. Nobody has the right to make you feel any particular way – Only you have that right. With a chronic illness you have enough to contend with. Let them just “get on with it”.

I hope this post will be of some help and consolation during difficult times. Just remember, if you can stay relatively sane through a diabolical illness, then that makes you a particularly strong individual indeed… Personally, I think that having an invisible illness is the “mother test of life”.

Resources:

The Invisible Disabilities Advocate (IDA) - http://www.invisibledisabilities.org/

Invisible Illness - What You Can't See Does Hurt Her - http://www.socialworktoday.com/archive/novdec2007p18.shtml