I’ll preface this post by saying, by and large I’m a positive person when it comes to living with and talking about myasthenia gravis. I don’t feel defined by my diagnosis, and yet I also recognize what a large role it plays in my day to day life as well as the impact it makes beyond just “Kait’s health”.
I’ve touched on this in past posts, like my most recent one on Inclusivity, Normalizing Without Minimizing, Between Stigma and Normal, and Being Here Now. Obviously, it’s a topic that I have a deep sense of obligation to talk about because the silence surrounding supporting the chronically ill and disabled community is often overwhelming.
Managing MG affects my career, my marriage, our finances, and nearly every decision we make from where to live, to when to travel, and whether or not we can have someone stop by the house. By sharing openly about my health, as much as I feel comfortable, I’ve found myself in a conundrum of straddling the divide between normalizing and minimizing. I try to find a balance that acknowledges both the bright and dark side of being sick for decades. I’ve found great hope, amazing friendships, and new purpose somewhere along the way. I also recognize the dread of hundreds of thousands of dollars of medical claims annually and the lack of knowledgable skilled specialists managing diseases like MG. For MG and many other chronic conditions, there are a few amazing clinics and specialists, but it can be difficult to find them depending on where you live.
The Reality is that I can’t do it all.
I work full time, and I also receive accommodations that are nearly unheard of in the working world. I’m a 100% remote employee who is not penalized for having 7 hours of infusion treatments every other week, indefinitely.
I exercise when I can, and I also have to sacrifice other tasks in order to use those muscles to deter any atrophy from lack of use. On days when I do exercise, I forego either: cookings dinner, cleaning up the house, walking the dog, etc. In order to work full time, I forgo other energy-heavy tasks like driving. My body just cannot handle it all.
I travel, but not during cold and flu season. Trips have to be planned around my infusion schedule and the several days of side effects afterwards. This also has to take into account doctor’s appointments and other obligations. That leaves me a limited window each month of only a handful of days, where recovery from the travel also has to be taken into account. Even after a “vacation”, I often need several days to recover.
I am receiving treatment that works to manage the disease for now, but have to go through new rounds of pre-authorizations every 6 months to prove that this non-FDA approved treatment is worth paying for. Even with a pre-authorization, there is no guarantee of payment. A one-time mistake with an ICD-10 code sent me into an all-out battle with insurance for months on end, which continually delayed treatments. That’s not an isolated incident. I’ve dealt with retroactive denials, countless peer to peer reviews, and so many appeals. During my best years, annually, my claims total more than a quarter million dollars. Years with more tests, more visits, more procedures have reached over half a million. The new medications in clinical trials on the horizon for my long-term treatment plans are estimated to be two to three times the cost of my current treatments.
By the numbers, it is astounding.
In 2017, a relatively calm year:
- 182 hours spent infusing on a workday (that’s just shy of 23 work days annually, or a whole month of working during treatment!)
- 2 days of recovery for every infusion added up to 52 days of recovery (or 26 weekends)
- 4 neuromuscular clinic appointments
- 1 port placement
- No ER visits, tests, or hospitalizations
- $256,335.90 in medical claims
I see the usual doctors that women my age see regularly; primary care, gynecology, and dentist. In addition to neurology, I’m also periodically am seen by pulmonology, dermatology, interventional radiology, orthopedics, and immunology for secondary issues, side effects of medications, and markers for possible other autoimmune issues (autoimmune diseases like to travel in packs). I’ve sought out holistic care with massage therapists, acupuncturists, chiropractors, nutritionists, counselors, and physical therapists. I know exactly which vein to tell phlebotomists to try first since they can’t use my port for blood work. Travis and I joke about my “status” as a professional patient.
Travis bears this burden with me. He accommodates my needs by taking on tasks like grocery shopping and other labor-intensive chores. He does all the driving and takes me to nearly every appointment. He gets help from my family to make sure someone is home to help with the dog during my infusions. He sees me through the never-ending cycle of how treatments and medications impact my mood and attitude, and gives me more grace than I think anyone has capacity to give.
Sharing all this information is not coming from a place of needing to justify my current situation. I know now, after more than 16 years, that I can’t convince others to see what they don’t want to see. It comes from a broken heart that sees how often the chronic illness and disability community is overlooked in terms of the seriousness of their condition, the wide-reaching impact of their symptoms and treatments, and how little support is offered to those who manage long-term incurable chronic illnesses and disabilities.
Many of us bear the burden of managing a serious diagnosis for decades in silence, with little understanding or recognition of what it is we go through. I know my story is not unique in the least, and that I have friends in the chronic illness community whose annual claims are sometimes double or triple what mine are, who are facing more complications, and they are often enduring the weight of this responsibility alone.
My hope in sharing this is that when you see or hear someone express the reality of living with a chronic illness, that you would become an ally in support of our community. Our vulnerability in sharing comes from a desire to normalize and reduce the stigma around health issues without minimizing the seriousness of our experiences.