Having a Rare Chronic Illness: I Look Fine, But the Pain is Real

Having a rare chronic illness that people have never heard of, you have to not only deal with the debilitating pain, but the aggravation of trying to explain your disorder to people that have never heard of can make it worse. My mother still mispronounces trigeminal neuralgia and calls it “trig-mee-nal”.  Should you disclose it to your employers? That’s an agonizing decision and again you have to have a lengthy conversation over and over again with your boss, HR, and co-workers which could leave you in a vulnerable position at your job. The alternative could be suspicion that the side effects of the meds you are taking to control the pain are the effects of illegal narcotics or some type of psychological problem.
Just because you can’t see my pain, it’s real. I am a master of distraction and deception just to be able to make it through my day. I listen to music, watch TV, or troll people on Facebook.  Trigeminal Neuralgia is rare, it’s real and I wouldn’t wish this suffering on my worst enemy. All of us silent warriors want the same things, to be recognized as sane, intelligent people trying to cope.

               

But you look Fine.

A person with chronic illness, especially a long time sufferer has coping skills that are amazing, almost pathological. You are always in some level of pain, but at some point you start charting it on a numerical scale. Any pain level above a 3 is feeling great. Nothing is worse than having friends of family members that dismiss your illness or treat you with skepticism when you are in excruciating pain. You can provide your family or friends with research of the illness; take them with you to your doctor’s appointments, or ask them to hand you your special pain scarf or heating pad while you wince in pain and teach them all your pain triggers and medication quirks, such as tingly hands and feet or short term memory loss. Thanks Topamax!

               

There are good days and bad days.

My good days are days when I can walk in my 5’ stilettos and not have to concentrate to walk straight. A better day is when I can remember more than something for longer than five minutes prior. My bad days are days are when I don’t have the will to put on makeup to go to the ER to get a shot or if I contemplate wearing flats out to dinner. Other bad days are if I don’t take the effort to put on actual clothes and put on workout clothes and I don’t work out. Sweat pants are the universal sign of officially giving up.

Join a support group online or else.

Guess how many people I know face to face that have Trigeminal Neuralgia? 0. My neurologist that diagnosed me said that I was the first person he has met in 30 years that had the disorder. That gave me so much confidence. When there is no one you know, and no one has even heard of your disorder and the advice you get from family is to “pray it away”, you tend to feel alone. Who can relate to the side effects of your meds, the intensity of the pain, the depression associated with the disease, everything you lose? If it weren’t for my online groups, my TN family that I can vent to, that truly understands the agony and suffering, I would’ve given in years ago.