My story:

If I had to use only one word to describe the way I feel since my diagnosis, it would be: “helpless”.  I now have a disconnected feeling between what I feel, what I read about it, what my friends and family tell me, what my doctors say I have and my own ability to understand what’s best for me!  I used to be able to discern exactly what to do about my health when my problems were more simple, more basic.  If I had a cold, I cooked chicken soup.  If I had a stomach ache, I got on the BRAT diet, for a few days and that took care of the problem.
Never in my wildest dreams did I imagine that my body would decide to attack itself.  That is preposterous; unfathomable!  But true.  Now, I need to rewire my brain, relearn and start over.

It all began slowly through the years.  Maybe the product of stress, childhood illness or exposure to ‘who knows what?’, during childhood.  I could name a few examples like: mass, street by street fumigation during mosquito outbreaks… But it would all be speculation, because even the experts are still trying to figure out the triggers and the specific causes.
Fast forwarding to recent time, I’m presented with a diagnosis of UCTD to be added to my Hashimoto’s thyroiditis, GERD, Ménière’s disease and arthritis, etc.  The latest diagnosis came after years of repeated tests, doctors visits and second opinions.  What it means to me is the need to learn how to do things in different ways and the inability to do the things I was able to do before due to pain.  My hands and extremities are the parts of my body most affected  by this for now.  There are days I feel like a much older person, there are days I am not so “able”.  But because this is an autoimmune disease, there are organs being impacted inside my body as well.  On the outside, you will see a person who is trying to “keep it together”.  I will still put on my best face forward.  I find myself smiling more, in an attempt to mask the pain I’m feeling inside.  I am still the same person with a competitive edge, with an education, with self-respect and pride.  I am still the mother who wants her child to find in her a role model, an example to follow, not to be an example of failure, instead.

My doctors can attempt to help me by treating the cause.  They can put me on a disease-modifying anti-rheumatic drug (DMARD).  I will feel better perhaps, but that can only leave my immune system open for new diseases to enter my body.  Doctors can treat my symptoms by giving me a pill for this and a pill for that, but each of those will have a short or long term impact on my health.  Some will do more harm than good.  The more time goes by, the more symptoms appear.  In no time, the amount of medicines I will need to go through a day, will skyrocket until the medicines start interacting with one another dangerously, leaving me confused.  Will I remember to take my medicine?  Will I take the right one, at the right time, when ‘mental fog’ is one of my symptoms?  Will my doctor take me seriously?  It’s all very disconcerting.  I have put my life on hold and I’m running out of time to achieve my purpose in life.  I’m frustrated.  My disease is holding me hostage.

I want science to help me restore my health.  I want scientists to think of ways to revert this cycle!  How did we go from healthy to sick?  Can we identify that moment?; can we turn it around?  What are the reasons why our own cells confuse our bodies with pathogens and attack?   We need to let scientist get the tools they need to reach clear conclusions, so that all our questions are answered once and for all.  We need to find those brilliant minds and help them achieve these goals on behalf of a forgotten and invisible group of patients who are tired of being sick.  Tired of being ignored.  We need help.  We need the real solution.  The only solution is to find a cure!

By: Anonymous mother

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