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Receiving the Needed Validation for My Health Came at a Cost

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I not long ago wrote about the importance of being validated by our health team.

What I didn’t factor is was that this validation would come at a cost. Mentally and physically.

Many of us struggle silently. We’ve been sick for years, sometimes even decades, before someone gives us an official diagnosis. We look at ourselves as being chronic complainers when we have bad days and can’t handle our obligations. We do our best to hide those bad days the best we can. What I’ve learned is struggling in silence also comes at a cost.

Some of us have struggled silently so long that those around us and closest to us can’t tell from looking on the surface how bad things really are. Some days we can’t hide it. On the days I actually have the spoons to have a shower and do my hair, I hate being told I look good. Such a positive statement just shows how good I’ve gotten at hiding my symptoms. And hearing the words, “You don’t look sick” – honestly I can’t even go there.

Many of you reading this are either relating or questioning the costs in referring to with your own illnesses and battles.

The costs for me being diagnosed is having to face full on the diagnosis and potential outcomes of my disease. Before I just had symptoms, flares and treatments. In my head I’ve known what was wrong with me since the very first doctor many years ago said the word “Behcet’s.” After countless hours spent reading up on this disease, and educating myself, all the puzzle pieces began to come together. So why after feeling dismissed for so long and finally being validated would I feel it came at a cost?

After years of being dismissed, it took its toll on me both mentally and physically. I have depression and anxiety and anger at the health care system. All of that on top of self-doubt. I walked into offices many times just wanting that validation and leaving feeling dismissed by the doctors that I felt were suppose to help me the most. Now that I have a proactive team behind me, I no longer have to worry about the diagnosis of Behcet’s. But that is also scary. Scared for my future. Scared of becoming sicker. And of the progression of this disease.

I don’t think anyone who is sick wants to be sick or diagnosed as sick. We just want validation and treatments to help us cope. Diagnoses are scary with all the “what ifs” they open up. And even though I know I will never get the old me back, I wonder if these medications will help me find her again. Will I be able to work? Or will they make things worse and take me farther away from her? The old me is always there, in the back of my mind, judging me on my bad days and helping me over do it on my good days.

With this disease, we don’t all fit in the same pretty little box. I belong to many groups where many seem to have it worse than I do – or worse off than the current me has. There are no maps to follow. We are all different with no two the same, and varying degrees of this disease. So how do you cope when you finally have to sit down and acknowledge after all this time that you are sick? That you aren’t “crazy?” And despite popular belief, you aren’t just looking for attention?

I’m going to have to practice more self-care and learn to be more gentle on myself. I need to educate myself more and allow myself to be heard, not to hide being the many masks I wear.

Tomorrow, if I have a bad day, I won’t look at myself as a complainer. I’ll listen to what my body is trying to tell me. And trust the medical team I have working with me. Laying down all those old feelings of dismissal and mistrust.

Validation is simply bring heard.

Now I need to take baby steps to begin my new journey, no matter where it might take me.

Unfortunately, being sick is part of who I am. It’s a part I have to accept, but not a part that defines me.

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Thinkstock Image By: yacobchuk

Originally published: November 15, 2017
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