The Long Lonely Road

IMG_20180222_150421_451-1.jpgThe world becomes a lonely place once you are diagnosed with chronic conditions and/or autoimmune disease. There are parts of the autoimmune life that you can not possibly fathom without living through it. It affects every aspect of our lives-physical, mental, spiritual. I have already found it extremely beneficial talking to other people who are autoimmune. I start to feel a little less crazy when I hear that others feel the same.

There is not a moment of the day that I am not thinking about my diseases and the effects that it can and likely will have on me, my life and my family.  There are moments of absolute fear and panic thinking and worrying about what the future will hold.  It’s hard to turn these thoughts off.  The only relief I have is sleep and that is scarce at best.  I’m already tired of fighting these diseases, and it’s only just begun for me.

IMG_20180130_131505_552.jpgAs bad as the autoimmune life is for the sufferers, a moment of recognition ought to be given to the spouses, partners, family members and other caregivers.  It is by no means an easy task taking care of someone that you love.  It’s not just the physical strain, but it’s emotional for our support team too.  My husband has watched me go from extremely active and healthy to a shell of a woman that can’t even go for a morning walk anymore.  Watching my rapid decline has taken a toll on him, but he keeps going for me.  If you’re lucky enough to have someone like this, count yourself blessed.  There are far too many of us trying to fight these diseases alone.

In an effort to make others feel a little less alone in this fight, I started this blog.  Now, you may not believe it, but I am actually painfully shy about my writing.  It has taken a lot out of me just to bring myself to sharing my words.  This past week an admin of one of the Facebook support groups pushed me to share my blog.  It was one of the most difficult things that I have done in a very long time, but I did it.  Being as self-conscious as I am about my writing, I honestly expected rejection and criticism.  Instead of that, I was met with cries of, “Me too”, and “This was written for me”.  Through sharing my blog hundreds of people were helped.  I never in a million years would have believed that my words and struggles would benefit even one person, let alone hundreds, and that has humbled me.  If my words can help even one of us, I will continue to write and maybe the autoimmune life will be a little less lonely for someone.  The autoimmune life is certain to be a long lonely road with ups and downs and twists and turns, but that doesn’t mean that any of us should walk it alone.

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3 thoughts on “The Long Lonely Road

  1. Beautifully said. You are lucky to have your husband by your side and if he empathizes with what you go through extremely lucky. I read a FB post yesterday where a woman said her husband is away in middle east and she hung up on him because he laughed at her regarding recurring complaints of her AI dis-ease. Your words are spot on. I hope to find comfort here as I am a mother of a now adult son who a year ago was driving and attending school. He now awaits O & M training for visual impairment as well as I drive him to appointments 2 hrs away 2-3 times a month sometimes. Yes supporting those we love robs us emotionally. The road is lonely. Keep doing what you do. Thanks

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  2. Courtney, keep writing, its therapeutic for you, as well as helping others in their journey. It’s hard to believe you are shy about your writing because you write so well. We’re in this together so you’re not alone. It’s my 20 year mark with an autoimmune liver disease and I just started my own blog thanks to you and many others who prompted me to start because of PBC Awareness Month in September. I’m here whenever you need me. We inspire each other. Never give up no matter what, Hugs my dear friend.

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  3. I also have several invisible illnesses. My son has RA, Gout and Kidney problems. He is also autoimmune. We are using products that really help the whole family.
    If you are interested, I now also sell these fantastic products. You can view my WordPress Site (still creating) or at http://www.ljmercer.myctfocbd.com
    It really works!! I wish you all the best hun. Hugs

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