Meet today’s guest blogger, Melissa, a MedX ePatient Scholar and patient advocate living with Sjogren’s (“SHOW-grins”) Syndrome, autoimmune arthritis, and chronic pain. Melissa shares what it’s like to deal with the daily frustrations that face the chronically ill.
I’m sick, but sometimes I feel sicker than others.
My primary diagnosis is Sjogren’s Syndrome. Sjogren’s Syndrome is a systemic autoimmune disease. The hallmark symptoms are dry eye and dry mouth, but it can cause joint pain, fatigue, weakness, and general achiness. It can cause “brain fog,” circulation problems, digestive problems, a variety of other complications, and just make me feel sick.
I feel like I have a pretty good handle on the day-to-day stuff now. I have a small arsenal of supplies I drag around: gum, xylitol “candy” and maybe water for dry mouth, eye drops, prescription and non-prescription medications, topical pain treatments, and maybe some makeup to hide the constant exhaustion.
Some people think Sjogren’s Syndrome is just dry eye and dry mouth, but those are more uncomfortable than people realize, and they have risks of complications, including lacerations and infections on the surface of the eye, and tooth decay and sores in the mouth. Dry eye and dry mouth can make me pretty miserable all on their own, but they aren’t what make me feel like I am “sick.”
And even though I experience pain every day, that’s not what makes me feel “sick.” When my fatigue is terrible, and I come home from work, and go right to bed, that’s not what makes me feel “sick,” either.
When I really feel “sick” is when I’m dealing with all the work that comes along with being a patient.
In the past six years, I’ve seen primary care doctors, rheumatologists, urologists, neurologists, gastroenterologists, an ophthalmologist, an infectious disease specialist, and urgent care/ER physicians. A couple of them have been great, a couple lousy, and a lot in between.
I’ve been on the phone for hours: scheduling doctor’s appointments, lab tests, and procedures; arguing with my insurance company; trying to get the results of all those tests. Doctors can’t be reached directly – I have to leave a message, and hope I am available when they call back. And those phone calls all have to be made during office hours, which means they are all made
from my very public desk at work. So I’m discussing personal information in front of my coworkers because I know if I don’t take a call from my doctor, it could be days before we manage to connect again.
I’ve arrived at the pharmacy, and found that they hadn’t filled my prescription because it hadn’t been pre-approved by my insurance. And I’ve arrived for an imaging appointment, only to be sent away because insurance hadn’t approved it.
I’ve spent hours sorting pills into trays, and hours filling out new patient forms and trying to figure out which parts of my medical records I need to bring to appointments. I’ve spent many hours in doctor’s waiting rooms. When it takes four months to get an appointment with a specialist, you can’t just walk out.
My boss has been very supportive, but I feel guilty. I miss work because I feel terrible, and then miss even more for doctor’s appointments and tests. When you call in with a cold, you sound sick. (*cough, cough*) How do you call in and sound autoimmuney?
I have a full time job, and being sick has become a second full time job. And that’s when I feel really, truly “sick.” And the sicker I am physically, the harder it is for me to deal with all that work. The phone calls, the paperwork, the specialist appointments, missing my real job, fighting for care, the medical records… That’s when I feel sick.
I know this affects my “compliance.” My intentions are good, but I don’t always follow through. I can’t always follow through. I know that it’s important, but there’s only so much I can do. Think about the amount of stress this all causes, and the impact that must have on my health.
So, what helps? Physicians who take the time to listen to me, who provide me with the information I need to make good decisions, and who support me in making those decisions. Supportive friends and family. Spending time with other chronic illness patients, who know exactly what I’m going through. And patient advocacy, which gives me the chance to take this disease, which can make me feel weak, frustrated, and alone, and do something positive and powerful.
Thank you, Melissa, for sharing your inspiring story!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!