Naturally Healthy 4 Life's Blog

A blog about health, nutrition, fitness and wellness

But you look so good!

 

Invisible

I have not posted in a while – life is full and I was feeling somewhat lazy.  However, it is a rainy, stormy day and a long weekend, so I feel a desire to think and write.

The fantastic news is that I am officially in remission. The final diagnosis is generally Autoimmune Disease, but more specifically, Hashimoto’s Disease and Chronic Idiopathic Urticaria (“CIU”). I take a synthetic thyroid daily and the hypothyroid symptoms improved dramatically within a few months (less hair loss, less joint pain, better sleep, more focused). As I mentioned in my last post, I was prescribed Hydroxyzine in January for the CIU. Within the first week, the giant welting hives started transitioning to small chicken pox-like hives, then NOTHING. I have not had a CIU flare-up in any form since early February and I no longer need to take the Hydroxyzine.

My flare-ups have occurred about every six years since my early twenties. I am hopeful that with what I have learned about taking care of myself in the last crazy year, the cycle may finally be broken, my body will completely heal, and just maybe I can prevent a recurrence. I know now that taking exceptional care of my body is simply not enough – true wellness requires taking care of my mind and soul, as well.

It was initially very difficult for me to tell anyone that something was wrong – I am a very private person. When I reached out to friends and family about my “mystery” illness, I was touched by the responses I received. However, I was also very confused and hurt that so many people that I thought were close friends not only did not respond, but said nothing to me at all when I did see them. It wasn’t cancer, but it wasn’t nothing either.  Didn’t they care?  Maybe they didn’t believe that I was really sick?

The term “invisible illness” is relatively new.   Some examples include other autoimmune diseases like lupus and rheumatoid arthritis, fibromyalgia, depression and mental illness, digestive disorders like Celiac’s Disease, etc.

People often judge others by what they see – this is natural human behavior. For a long time, my illness was a mystery to me, as well, so when people asked me to explain, I could not and I would often hear, “but you look so healthy” or “you really don’t look sick.” It was also frustrating when people offered unsolicited advice – if my doctors and I could not figure it out, what made them think they had an answer? I had another friend tell me, while I was in the middle of a terrible flare-up, that I should look at it as a blessing. Good advice, but REALLY bad timing to tell me this when I was in the depths of it – excuse me if I don’t feel very blessed right now!  Of course, now that I am moving beyond it, I DO feel that it was a blessing – but that’s a post for another day.

Very few friends or family actually saw the illness because I was often in hiding. I stayed home a LOT and did not accept invitations or reach out to friends. When they did see me, I looked healthy. My husband is the only one in my life that I think truly understands what this last year did to me because he lived it every day – it also deeply affected his life, as well as our relationship. I know that he felt frustrated and helpless, yet was loving, supportive and encouraging to me.

Those friends that appeared to be “fair-weather” are still in my life. They simply did not see sickness. If they did, they certainly did not see it on a daily basis – the symptoms, the frustration, the depression and the isolation.   In hindsight, I think my expectations of their response were idealistic and unrealistic, so I choose to release any judgment of it now and hopefully educate people along the way.

We all are sick on occasion – we pick up viruses here and there.   But what if your virus never went away? In fact, what if it just progressively got worse and days turned into months, with no hope of resolution?  What if your doctors (even specialists) could not pinpoint the cause, provide a diagnosis or find a treatment, and you were told that it could potentially be part of your life forever?  Then try to imagine explaining this reality to your friends and family – when you look perfectly fine on the outside.

Our culture is taught to believe that illness and disease are visible and apparent, and that when we are sick, we go to the doctor, the doctor diagnoses the issue and prescribes treatment. That did not happen to me, nor does it happen to a lot of people, even in our very medically advanced world.

There is still more that we don’t than what we DO know. We need to continue to educate ourselves, let go of the past, manifest kindness and release judgment.

Of course, sometimes, this is easier said than done (especially in an election year).   😉

May 28, 2016 - Posted by | Health, Uncategorized | , , , , , , , , , ,

2 Comments »

  1. There are not many people who understand what we are going through. I am in a similar boat and am looking to, as you said, educate myself, let go of the past, manifest kindness and release judgment.

    Best of luck in your journey.

    Comment by The Chronic Hive | July 6, 2016 | Reply

    • Thank you for your comment! I am so sorry that you are experiencing this, as well – but it’s comforting to know there are others out there. I think it is so important to share these stories. It was by my own research and learning about what others did that helped me guide my healthcare providers and made me realize that I was not alone. My best to you, as well.

      Comment by angelalauder | July 8, 2016 | Reply


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