I Hate These Two Words: Invisible Illness
I never had any health problems, nothing major at least. I’ve been blessed in that regard. However, I’ve been blessed with inner strength and boy was that tried and tested the past several years when my husband became not so much of the person I married but a person with a constant scowl; who at times couldn’t manage a dinner in a restaurant, someone who developed supersonic hearing; who would have dreams of being spun backwards and wake up so dizzy he couldn’t stand up; the person who spent days on end in a darkened room; whose conversations revolving around “ending it all” became more and more frequent. The person I had married wasn’t there anymore. He couldn’t work, couldn’t function, depression swallowed him up entirely.
Our odyssey of sorts began with a general physician, then an internist, next an endocrinologist, an ENT, a neurologist whom prescribed a whole pharmacy of meds in an attempt at finding something that “worked.” There were so many others that I just can’t recall all of them.
It was after one particularly nasty episode — that’s what I began calling them — in which James was down in bed or horizontal for over 2 weeks with dizziness that me and Google became very acquainted. I stumbled upon a website called Vestibular.org and that site hit home in so many ways. I immediately contacted the doctor listed on the site and made an appointment.
Initially, the diagnosis was another vestibular issue called Superior Semicircular Canal Dehiscence (SSCD). Pretty gnarly all on its own, it mimics symptoms of vestibular migraine/MAV. This then lead to a Facebook support group and to a 2nd opinion at UCLA, followed by a third at Johns-Hopkins. We have been all over the country trying to figure this whole ordeal out. Johns-Hopkins was the saving grace in that Dr. Carey and staff were wonderful. James’ symptoms had gotten so severe that my stress level had sky rocketed to the point that I was afraid one day I’d come home and he’d be gone, as in no longer of this earth. It was a desperate time that I hope no one ever, EVER has to endure. We found he has SSCD symptoms and does have a dehiscence, but no syndrome yet so he was given a double whammy: SSCD and MAV. OH JOY!!!
Since the SSCD and Vestibular Migraine Diagnoses
Family tries their best to understand, but honestly I get sick and tired of the platitude-like sympathy. Want to know how it really is? Come live with us for a while then you might get an inkling. It makes you angry, these invisible illnesses. They are isolating, frustrating, stressful, financially straining because not only are you the caregiver but the person who supports EVERYTHING!! I’ve spent years feeling like Mount Everest sat on my head. I’ve had days on end where I would go in another area of our home or even in the backyard and have fits of screaming and crying, wondering how the heck was I going to get through this in one piece and would I still be married in the end? I felt I couldn’t abandon him, I felt guilty for having these thoughts. I wanted to be normal again, wanted to see my friends and family, wanted to be social again. We had become hermits. Couldn’t ever commit to anything because when we did, I would ultimately go by myself or not at all. People begin to misinterpret this as something to do with them and that couldn’t be further from the truth.
I would also shield James, tried to protect him from the world because I didn’t know where his breaking point was. I just wanted the old James back. But I also began to realize it probably was unrealistic in wanting that. This was ultimately life changing for both of us.
Coming home from Johns Hopkins was a relief. We knew what it was, what was happening and had a game plan. For him, it was a lot of changes, chiropractic care, supplements, dietary changes, etc. It’s helped, but it will never be gone completely. It’s chronic. However, the past couple months have been the best ones in 5 years, despite all the life crap we are currently dealing with.
All I can say is, my perspective of other people has done a 180. I always think to myself if someone is rude, impolite, looks a bit off……maybe it’s something they can’t control, maybe it’s something they are battling internally and who am I to pass judgment on them?
Be kind, as you never know what another person may be enduring. Just because I have all my appendages, am walking upright, and look fine……..I just might not be fine at all.Karen Hannafious-Chapon
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