Autoimmune Diseases Suck

That title really says everything I need to say.

I have a half sister who is old enough to be my mother.  As a child I remember the worry on our dad’s face as my parents discussed her medical condition. I was too young to fully grasp what they were discussing but I knew it was scary and rare.   Over time I would know that my sister had times when she was in battle with her body to defeat the horrible disease that ravaged it.  And happily she has continued to conquer it and is in her 70’s now.  Her condition, Relapsing Polychondritis, is still a rare autoimmune disorder.  She was my first introduction to an autoimmune disease and for a long time the only person I knew who had one.

An autoimmune disease occurs when a person’s immune system starts to recognize things that belong in your body as foreign.  The immune system starts to attack its own body causing negative effects. Examples of autoimmune disease are Lupus, Rheumatoid Arthritis, Hasimoto’s thyroiditis, Sjogren Disease, and Celiac disease to name a few.

In today’s world I feel like I cannot accurately count how many people I know afflicted with some form of autoimmune disorder.   So many of these victims are young people.

I’ve known one victim since she was 16. She has always been fit and looked like she should be the picture of health.   She seemed to be sick even to the point of hospitalization more often than she was well.   She never had any energy and like so many adults would I assumed she was not taking care of herself and staying up too late.  Then when she was around 19 she was diagnosed with Lupus.   I was happy she finally had a diagnosis but I still didn’t really understand what that meant.  She continued to miss work and physically not look as bad as her symptoms must be to an outsider.

When my oldest daughter was 18 she had a fall that resulted in a broken arm and vertebrae.  This was a very serious injury but fortunately she healed well.   She continued to experience pain at the fracture site in her arm that didn’t seem to add up.   The orthopedic doctor had no answers for us.   Then her GP’s office did an autoimmune panel and at 20 my daughter was diagnosed with Lupus.  Her frequent unexplained fevers and illness and pain suddenly had an explanation.  But even with the diagnosis I still struggled to understand how my daughter could sleep so many hours at a time  and fail to be roused by an alarm of any kind.  And I will admit to frustration as she would call in sick to work or miss school.  I’m her mother and I still didn’t get it.   I don’t know what finally opened my eyes that this damn illness was controlling my daughter.  I saw her struggle to fight fatigue and fever and I knew she wasn’t faking and my heart broke that I could do nothing to stop it. And I started to understand more the stigma people with these diseases face by those who have not been intimately touched by them and I vowed to be more understanding.

So that leads me to my story.  I think I’ll tell the details in a different post but suffice it to say that I have now also joined the autoimmune club.  My sister has a daughter who is in her early 40’s who has been suffering with Lupus and RA.  When her husband was just diagnosed with Polmyalgia Rheumatica and Giant Cell Arteritis after coming as close to death as he could waiting for a diagnosis their daughter decided she could not possibly have been adopted (though she is). I told her I am now a member of the club and would have been happy to have been told I wasn’t wanted in it!  And to make things worse my youngest daughter was also diagnosed four days before her 20^th birthday with the same issue I have.

What makes these diseases so horrible is the lack of good testing.  My daughter’s orthopedic doctor cancelled her surgery because she had two tests that showed maybe she had an autoimmune disorder.  If you go to the doctor with a sore throat you will have a strep test or flu test.  If they come back positive the diagnosis is pretty obvious.  My oldest daughter has now been told she doesn’t test for Lupus but may have a different autoimmune disease or maybe overlapping diseases because she has symptoms from several. My tests were inconclusive but highly suspicious due to symptoms and another condition I have.  So now based on a probable diagnosis I am being treated with a very expensive medication with lots of potentially bad side effects.  I don’t really feel great about not having a way to know that I definitely have what I’ve been diagnosed with.  And then there is the feeling of failure because my own body is doing this to me.

I don’t really feel like a failure but I am frustrated that I can’t just stop my body from harming itself.  I am grateful we live in a time with better diagnostics and treatments for these diseases.  I continue to wonder why they are so common now.  Is it because we have a better understanding and diagnostic ability or have our environmental factors played a role?  I’ll talk more about those theories in a different post as well.

 I would like to help people understand to have patience.  Even though we may look fit and fine many of us have pain and fatigue that we are fighting.  We don’t mean to be grumpy or lazy but sometimes it comes across that way

 For now I’ll leave you with how I began – autoimmune diseases suck!