"SLK of Theodore: Superior Limbic Keratoconjunctovitis, rare and chronic inflammatory disease associated with dry eye disease and conjunctivochalasis"
Before you read all of the details of my story, just remember that even though I have had very, very extreme lows, I am still fighting this disease with all the might I have in me. Please read this with the understanding that this illness is an unending journey that needs to be seen for what it is, including it's horrible ugliness. Just remember that even though this condition has turned my entire life completely upside down and shaken it into a trash can that was on fire, I am not done fighting for myself or for other people with this eye condition. I want to be someone who is involved in a community and I will listen to other people like me who need a shoulder...
Here is my story... I was an independent, hard working, devoted research scientist who was diagnosed with a rare and chronic inflammatory eye disease at the age of 29. I somehow had still managed to graduate in the top 7% of my class at university in that year that I was diagnosed. I grew up as “system kid” with a government supported 51b for neglect and abuse filed against my parents and was put into foster care and living in my own apartment before the age of 18.
Over the course of my final year in college, everything started to change. Daily eye pain caused me to start seeing my eye doctor regularly, and after an attempt at lower punctal plugs that scratched my eye each time I blinked, and a myriad of eye drops that made my symptoms worse, I ended up in the ER to have the plugs removed. I was then referred to a corneal specialist. My corneal specialist did not develop any kind of trust with me, if anything it was the opposite. He forgot meeting me before, forgot that I had plugs put in before, forgot what they were made of, and that they were removed in his office! (this was all mysteriously missing from my medical chart). And his assistants messed up taking notes on my file each time I visited and I had to correct him on them over and over again. I was usually there alone because I would leave work early as not to miss a full day, and each time it felt like absolute torture. I waited hours and hours in the waiting room each visit and had lower plugs inserted 3 whole times before my final diagnosis, Theodore’s SLK. It required continued nightly heat compress treatments with massage gland expression and chemotherapy eye drops that cost an arm and a leg (and a PA before it was finally covered almost a year later). It required continued unlimited artificial eye drops throughout every single day of my life (still does) that caused more burning that relief. It required continued use of oral antibiotics that kept me from going in the sun (to clear my unconfirmed MGD because there wasn’t time to use the medical equipment that would determine if my glands were still functioning or had dropped out). It cost me so much money that I took out my full student loan offerings my final year to be able to afford it all; I was a student and an intern and on my own with an apartment and bills and no help from family. I quit my second job because the pain was too much to bare, (I had almost always had a second job since I was 18 to pay for unexpected bills. This is what you do when you don’t have parents to help you out in a bind). When I finished my daily intern duties, classes and homework, I would go to bed as soon as could because the pain was intolerable and I couldn’t keep my eyes open any longer due to the burning agony; and if I cried, forget it, the pain was even worse and my eyes swelled up like golf balls...
I have to stop for a second to change gears because it is so important for anyone reading this to understand, this is NOT a manageable disease without the proper guidance. I wanted to die. Everyday. I went from being the most promising student in my graduating class to writing up drafts of my will and printing healthcare proxy forms in my spare time. There were many times that I wondered how I could end my suffering while causing as little pain to my loved ones as possible. I know it may be hard to hear, but I thought driving off of a cliff and other ways that would make it seem more like an accident. You are probably wondering why I didn’t just “suck it up” and take antidepressants right? Well I did. They made it worse. I took Celexa and felt incredible highs and the lowest lows and cried more than I ever had and wanted to die even more, which is uncommon but does happen. I tried propranolol 40mg and it was a life saver for my depression and anxiety during school and work presentations, until it made my eyes even worse. I filled a prescription of zoloft and left it sitting in my drawer looking at it and wondering if a bad reaction would be the final straw to send me over a cliff that I couldn’t come back from. It is still in my drawer to this day. I cannot bring myself to come any closer to this edge I am on, so yes I have tried to help myself in many ways. But I had also been told by doctors that it wasn’t “real” eye pain-This is something that is painful beyond comprehension, to be depressed and in pain with a life altering condition that people do not believe. I was told to blink more even though my disease is mechanical and every blink causes more damage and pain. I won’t go into detail to describe what it is like to be suicidal due to this disease, but if you are a doctor reading this, you have to know that it is very VERY real, every single day. Is this something you would allow any friend, relative, yourself, or loved one to experience? Wouldn’t you go the extra mile to help someone out of this rut?
From my many years in healthcare, I never, ever, let anyone feel like I hadn’t done at the very least 110% of my capability to help them. If I couldn’t figure out how to help them then I told them “I have done 110% of what I can and have asked around, and here is someone who knows how to help you and I have already told them what you need.” I don’t know why this isn’t the standard in health care. I live in one of the “top rated” places in the world to receive healthcare. I am actually disgusted by the overall level of treatment I have received and can’t stand to think other people will be treated this way. I can confidently say that this is the reality for many of us suffering from eye conditions because I have spent so much time on support groups online reading other people’s stories. Even if I am able to share my knowledge and skills to further scientific research, I still suffer and cannot go in the sun or feel the wind on my face and hide in the shadows; and what kind of life is that? I feel that many doctors do not understand the incredible impact they can have on a patient’s willpower to keep fighting or not to keep fighting. If you are a doctor and feel that this is not how it should be, please prove us wrong. I will never understand what an incredible weight it must be to be a doctor, but that is why a doctor's job is held to the highest regard in our society. You know things we don’t know. For the moment, my story is a downward spiral of medical/student debt and depression/isolation fear and pain. I fight every single day to find a reason to keep going on. But I want to end my pain and I wish my doctors could help me more. At this point in time I have left both my jobs, graduated from university with Summa Cum Laude and as of today, lost my student health insurance which was helping to cover my eye health expenses. I have no idea what the future has in store for me, but these support groups help me get through and I am not done fighting, but I am here to say that ophthalmology and healthcare in general needs a huge f***** overhaul.
Update (September 22, 2018):
I am currently doing a bit better than when I wrote that, but still suffering and not able to do a lot of the things I did before. I am learning to cope but I am having a very difficult time navigating my future career while taking care of my eyes. I don't want to give up science so I am researching Sclerals to see if I am a candidate. I'm not sure if I will be able to work at the bench with Scleral lenses, but I want to find out for sure before giving up on that aspect of my career. In the meantime I am looking into remote work so that I can use as many drops as I can all day long and wear any eye gear that I need while I work. So far it is very difficult to break into a new field and I haven't had much luck, but I am still trying.