The truth sometimes hurts and the reality is that chronic illness is not always pretty. While positivity, strength and optimism are usually my forte, especially on this platform, there are times when being chronically ill feels like a prison sentence. I didn’t ask for this
life and would not wish chronic illness on anyone. People often ask me how I live this life; how I work full time, go to school full time and try to maintain a social life so I don’t end up completely isolated and depressed. Honestly, I have no idea. There is no secret; I honestly have no idea how I am still pushing forward. People often respond that it is because I am a strong person. I would refute that statement. I am not a strong person; I am just trying to survive.
What do you do when your body betrays you? When you look in the mirror and barely recognize yourself after an autoimmune flare ravages your body?
For those who are new to my journey, I have multiple chronic health problems including Sjogren’s Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), and small fiber neuropathy. In short, my body has been attacking itself and has caused damaged to my eyes, nerves, lungs, heart, skin, GI system, and more.
Recently, back to back procedures and illness beginning with having my tonsils removed, launched my body into a severe autoimmune flare. I have lost about 20lbs from being constantly sick for the last two months. Dealing with withdrawal symptoms after being on constant pain killers for over a month. Then spending nights sleeping on the bathroom floor with my head in the toilet bowl or curled up in pain, have become a common theme. Then waking up in the morning, putting on the mask and pretending like I am a normal healthy adult is my routine. I have no choice but to put on my big girl pants and deal with my every day adult responsibilities.
Anxiety associated with chronic illness has also become a reality. After much practice, I have developed many coping mechanisms and strategies to deal with being chronically ill. However, my one weakness is anything associated with my former port (device placed under the skin in the chest that allows for easy IV access). It became so much of a problem that I flew 3000 miles for the simple procedure of having my port removed, as I wanted to lessen the amount of anxiety caused by the PTSD stemming from prior similar procedures.
Right now, I am at the point where I need to make some decisions. My health is not in a good place due to the multiple procedures, illnesses and lack of treatments in the last two months. Furthermore, my infusions of the medicine that “kill the bad inflammation” or “fake chemo”, have started to wear off as I am due for another infusion. I have to make the decision as to whether I want to continue to complete a treatment that is almost guaranteed to make my condition worse, before it gets better but could also be life threatening given the complications that I had during the last set of infusions. It is like I am damned if I do and damned if I don’t. Even if I complete the treatment and it does work, it is likely that this “flare” will last for at least a month more. The unknown is honestly the most difficult part of this to deal with. Feeling like crap is obviously hard but not knowing when it will end is even more difficult.
One of the most important lessons that I have learned from being chronically ill is that there is no knight in shining armor. No one is going to swoop in and save the day; chronic illness is long lasting. No one is going to save you. My doctor isn’t going to tell me that there is a magic cure and I will be all better. There isn’t even one set treatment that will give me some relief. My friends aren’t always going to be there to support me. There isn’t always going to be someone there to take away the pain and unburden me from this nightmare. The reality is that you have to save yourself. You have to be your own advocate. If you think that a doctor isn’t treating you fairly, speak up for yourself. Research medications and treatment and bring that plan to your doctor. Medical appointments should be collaborative efforts. Trust your body. You know your body better than anyone else. If you think something is wrong, go with your gut. Even if you receive medical advice or a diagnosis that doesn’t seem right to you (or lack of either), don’t be afraid to get a second or even third opinion. Fight the insurance companies who believe that life saving treatments aren’t “medically necessary”. Advocate for yourself and do
what is best for you. You have to make the effort to get out of bed every day and figure out how to live your life in whatever way makes you happy. Try not to compare yourself to anyone else, however it may be difficult. It’s human nature, but it can be detrimental to your physical and mental health. Do what YOU can do and work based off of YOUR reality. Also, don’t let anyone else compare you to another person, chronically ill or not. Not every person is the same. Again, you have to be comfortable in your own skin and do what is best for you because in the end, YOU are the only one that matters.
I say all this to say, be kind and be compassionate. You never know what someone is going through. Those who fight invisible illness are undercover superheroes. However, sometimes even superheroes need support. No one should have to fight their battles alone.