Thursday, January 3, 2013

Invisible Illnesses

When you are visibly disabled, nobody questions when you say you are having a bad day.  When you are in a wheelchair - or even on crutches ... if you are an amputee .... if you have a visible mental illness, which is clearly seen to others - you are never questioned.  You can say "I'm not feeling well today" and that is enough.  There is never a need to justify yourself.  Never second guessing.  This is true of every day people - but also with doctors.  Perhaps why so many people with invisible illnesses have such a difficult time being diagnosed.  Doctors just do not believe what they cannot see.  I cannot tell you how many times my doctor would offer me downers and uppers when I would come to him in the beginning - telling him that I could not sleep - yet I am always exhausted.  I cannot begin to tell you how many times my doctor told me to go exercise when I told him that my body hurts.  I had no broken leg.  Nothing to be detected on an x-ray.  Illnesses such as FMS are diagnosed by process of elimination.  Is it MS? Nope.  Is it Lyme Disease? Nope. Is it Lupus? Nope .. and the battery of tests continue - eventually the doctor informs you that you have Fibromyalgia.  And then informs you that there is nothing you can do about it.  The truth of the matter is that many in the medical community are only just now coming around to realizing that FMS is indeed a real illness - and not a 'garbage pail' disease ... as previously thought. It was believed for decades by the medical community that if there was no test to prove you had a known disease - then you were just given the label of FMS and sent on your way.  As if FMS suddenly took on the meaning "Fake Medical Symptoms".  Just because they did not know - they automatically believed you were faking.

When the medical community does not believe in your illness it makes it that much more difficult to have your friends and family understand what you are going through. Never mind the community at large.

I do not profess to speak on behalf of all who suffer with FMS or other invisible illnesses - however, I am certain that I am safe in saying that people who are suffering do not want pity - we want to be validated.  We want to be heard. Understood.  And we do not want to have to justify our every ache and pain.

When I say that I am in a flare - I am hopeful that perhaps someone might say "I hope you have a better day tomorrow."  or "Is there anything I can help you with?".   Looking at me like Bambi in headlights - with a quizzical arch of an eyebrow and asking "Why are you so tired? - What have you done?"  is not helpful.  In fact it in some cases will only add frustration to the situation.  And as we know, frustration can lead to stress, which leads to a deeper flare.  And round-and-round we go.

Unfortunately, those who live with FMS, Lyme, Lupus, IBS, ME and many other invisible illnesses are suffering behind a veil.  Not that we want a big spotlight cast down upon us. Nor do we wish to carry around a sandwich board announcing that we are ill.  What we do need is education for those who are well-bodied.  Training in that just because you cannot see it - does not mean it does not exist. Particularly within the medical community.

If a pregnant woman gets on a bus - people will give up their seat.  If someone with crutches gets on that bus - people will give up their seat.  If an elderly person boards that same bus .... well ... you get the idea.  If a person with an invisible illness gets on that bus and appears to be 'normal' but is in fact in agony and desperately needing to sit - well ... they are pretty much screwed. 

One of the joys I experience with FMS is poor equilibrium.  I can be walking (on a good day) and suddenly it is as though I am drunk - I cannot tell you how many times I have broken my toes on baseboards or the legs of my coffee table.  Balance is indeed a huge issue for me.  Thank goodness for my 90lb dog Bentley who is not a technical dog guide, but helps me immensely, and on many occasions has saved me from a fall!

Can you imagine me standing on a crowded bus?  Yet - I look fine!

If you are able-bodied ... and this post finds you ... I ask that you take the time to educate yourself.  Knowledge is power - right?  Learn to examine beneath the surface of what your eyes tell you appears as 'normal'.  Look in the eyes of a person, eyes do not lie ... do you see pain in the expression? Discomfort?  Is the person on the bus hanging on to that poll for dear life?  Do you have a friend or loved one who lives with an invisible illness? The next time they tell you that they are in a flare - or that they are tired .... please do not ask them to take up precious little energy to convince you that their discomfort is legitimate.