For our innaugural Guest UII Blogger Post, allow me to introduce my mom, Charlotte! I swear, I offered her the option to write on any topic she wanted including her own life with chronic invisible illnesses, but she insisted this is the topic she felt moved to write on. Additionally, this is her first EVER post (she's not a blogger, but is quite a writer as you'll see), so let's give her a great big UII Welcome!!!
(Here at UII, we tell it like it is...and, well, my parents are goofballs too!)
Excuse me, Doctor, do You Validate Illnesses?
Invisible illness; for something invisible it has certainly plagued me all of my life. I think about this topic in two layers. First there is the 50+ year struggle that I have had with autoimmune disorders, iced over with the 20 year challenge I have had as the mother of a daughter with autoimmune disorders. I am like the Naked City of medical experiences, I have a thousand stories to tell, but today I seem to be focused more on my daughter and our experiences getting her diagnosed, and most importantly, helped. I think there could be other parents out there who are at the beginning of their journey who might need support as they go.
Jen is now 24, nearing membership to the quarter century club. I had gestational diabetes with this pregnancy and her birth was a 44 hour saga that ended in a c-section. We also had a couple of close calls over the 9 months. However, she arrived - high bilirubins, but otherwise gorgeous and healthy in every way. I don’t approve of mothers who can’t acknowledge that their baby is less than beautiful, I certainly would have acknowledged it. I just got lucky, my little girl was genuinely the most beautiful x-chromosome ever born. She also did seem to be wonderfully healthy.
A few years into parenthood, we found this to be less and less true. Jen was in daycare from age 13 months to 2 and a half years. Within the first six months, she had so many ear infections that she needed to have tubes placed surgically. Doctors explained that she was in danger of hearing loss. I attributed this to being around other small children as she was now being exposed to so many more germs and bacteria. About this same time she started to complain, then actually cry from leg pain, centered very much in her knees and ankles. We began what was to become our personal family recreation: we went from doctor to doctor seeking relief for our child. She had bone scans. We were cautioned about bone cancer. The final dx at the time- growing pains. Growing pains, like the catch-all phrase my mother always used when she didn’t have the patience to deal with our childhood owies. I knew as an adult that this child had more than “growing pains”. Of course I was grateful that she didn’t have cancer, but there is a lot of painful gray area between those two diagnoses.
Time marched on and Jen started kindergarten. Day one Jen came home and announced she had met a wonderful friend. Day two Jen came home and announced her new-found friend was out of school with some kind of illness. Day 11 Jen woke up with the worst case of chicken pox I had ever seen; certainly way more severe than any I ever witnessed. Like the generous sister she was, she passed it right on to her 2 year old brother. He had a healthy case of chicken pox, went through his ten days of symptoms and promptly got over it. Jen, however, remained home for 2 more weeks, super lethargic and in leg pain. Her teacher came to drop off some class work and casually asked if Jen liked to get attention. I saw nothing in Jen that seemed particularly attention seeking. She complained when she was sick, but she didn’t seem to have any agenda. Jen returned to school but missed in excess of 40 days of kindergarten due to illness. Luckily kindergarten was optional in PA, not mandatory. She still managed to excel academically in spite of it, but we started to realize she didn’t have the same kind of immunity that most kids have. If we passed a sick child in an elevator, Jen would be sick in 3 days. I also came to the realization that the school was beginning to think that she was, dare I say it and pay it homage, a hypochondriac. The nurse said she wore out a path to the infirmary complaining of leg pain and being tired. Additionally she started to display an upsetting personal tic, or at least we thought it was a tic at the time. She picked at her eyes constantly.
My husband and I did not have endless funds nor endless time off from work to make doctor appointments, but we did it just the same. I was perfectly convinced, in my heart, that this child was not faking anything. My gut instincts were on point. My biggest fear was that we would miss a diagnosis, and find out at some later time that she had a problem that could have been corrected if only we had known sooner. So the visits continued.
I have been called every possible synonym of over-protective that there is. Ordinarily that would have reduced me to tears, but this was my daughter, my baby cub as it were, I would ignore the barbs for now and try to remember to punish these rude people at a later date. I had more important things to do at the moment. Jen finally received a partial mushy diagnosis of arthritis and was prescribed Tylenol. Pardon me for being so esoteric, “BIG WOO” - Tylenol did absolutely NOTHING to put a dent in her pain and symptoms. She went to beloved ballet classes, only to be sent home because she invariably had ankle problems too intense to allow the teacher to let her remain in class. Still no answers in sight, and still smart alecky teachers with their innuendos, “who ever heard of a child with arthritis, oh just look at her, she is healthy as a horse”. How I grew to hate the words “but she doesn’t LOOK sick”. Then it happened.
When Jen was 14, I noticed a small bald spot on her head, around Christmas vacation. It was about the size of a pencil eraser in diameter. I thought about it and figured that perhaps this is our lucky sign. Jen will start to go bald and finally we will get a diagnosis. Some luck, huh. Anyway, I made a mental note to check the spot occasionally without mentioning anything to her about it at all. Teenage girls are very sensitive about their hair, and even more so about losing it. I realized by Easter that the pencil eraser spot was now the size of a quarter. Time to seek yet still one more diagnosis. I dared anyone to tell me she was imagining this. Again we went on a tour of the hospital medical specialty offices. The dermatologist recommended new shampoo. The rheumatologist made fun of her teeth. Nobody in fact, had a diagnosis though. They suspected everything from clogged pores to lupus, BUT nobody had a definite diagnosis. Once again pure circumstance intervened.
Jen was very much into color guard in high school. All of the energy she could muster was channeled into 8 hour practices on Saturdays, plus 3 weeknights and competitions after Saturday rehearsals. Although she was in pain, she pushed her body to the limits with exercise. This turned out, in retrospect, to be a good thing. One day during a summertime practice, in 90 degree heat and direct sun, Jen finally was outdone. When her father picked her up and saw the state she was in, he quickly took her to the hospital emergency department. There, she was given hydration and kept overnight. Finally convinced that she was truly experiencing a serious condition, doctors began to consider taking her seriously. We originally took her to an adult rheumatologist, who began to explore the blood labs that indicated an autoimmune condition. At the time, he suspected Lupus, and instructed Jen to insist the second dermatologist she visited for her bald spot perform a biopsy (expecting to find Discoid Lupus). Instead, the biopsy uncovered her Localized Scleroderma. Having started the process, the adult rheumy became uncomfortable treating a minor and referred us to A.I. DuPont Hospital so she could be seen by pediatric rheumies. There she was treated by excellent doctors who FINALLY began to put together the pieces, and Jen finally received her first in a long line of diagnoses – Sjogren’s Syndrome (followed quickly by Raynaud’s Phenomenon and Dysautonomia).
At last, diagnoses. Diagnoses that brought with them a plan for treatment, possible medication options, partial relief from pain and worry but most importantly, VALIDATION! This child finally had the dignity of a diagnosis. Remember all of those people I said I would punish later on? Well it wasn’t really punishment, I am Catholic so I don’t do the revenge thing, but I did manage to make my first two calls to the school nurse and 3rd grade teacher who were the most adamant defenders of the hypochondriac theory.
My point in sharing this saga? The lessons to learn are to ALWAYS listen when your child says she/he is in pain. If the diagnosis is in an autoimmune spectrum, expect it to be a long time coming. Lastly and most importantly, parents and caregivers, TRUST YOUR OWN INSTINCTS! Doctors have tons of education and quite a few fancy schmancy letters to their names, but nobody knows your child like you. There is nothing that disturbs your child more than to have pain go invalidated. I know my daughter was aware of all the nasty remarks that were made over the years. I didn’t like her to focus on them, because I told her very early on that I truly believed she had a real medical issue and that we wouldn’t stop until we got our answers. I am proud to say that her father and I kept that promise to the letter. Jen is of course in charge of her own medical well-being at this time. I know she will always seek answers and demand honesty from her doctors. I also suspect that when she becomes a mother some day she will, if nothing else, trust her own gut feelings about her child’s health issues. I have no doubt she will grow a set of bearclaws too when she needs them.