Vitiligo

This may be one of my hardest blogs to write because it is not a subject I am comfortable with. My sister says that it is because I am vulnerable, that’s a good word, it is how I feel. Maybe add fragile to it as well.

Vitiligo is an auto immune skin disorder where your skin looses its color or pigment, your hair can loose its color, in one spot or many and it can even change the color of your eyes, it can affect your mucous membranes like inside your mouth and nose.

You honestly have no idea where it is going to strike.

My body is battling with this and it has become too obvious to ignore because I feel the lingering stares of people when I go by, I hear the comments, rather than answering 100 questions I would much rather write about it.

I wake up in the morning not sure what to expect because part of my skin color can be missing. It can change my hair color over night. I now have one eye brow solid white (no pigment) while the other is normal. I woke up to that one day, it happened over night.

I was calling myself the vanishing woman because it felt like “I” was disappearing. It did not help that my last 9 months many things have vanished for me. I am not sure that was a term that was helping me emotionally so I have stopped using it.

Vitiligo occurs when immune cells destroy the cells that make brown pigment (melanocytes). This destruction is thought to be due to an autoimmune problem. An autoimmune disorder occurs when the body's immune system, which normally protects the body from infection, attacks and destroys healthy body tissue instead.

Www.pennmedicine.com

It is not considered curable and it seems to be touted as permanent but there are some treatments that can help slow things down. Skin grafts are a used in serious cases. It is not

contagious or life-threatening, it is not an infection. You cannot “catch” it from me.

My discomfort is your discomfort because I feel that others are not sure what to do or say. For example if I go to lay my hands on people when I pray for them I wonder, are they comfortable with me touching them? They have no idea what is wrong with my skin. What are they thinking…?

Vitiligo can affect all people, all ages, all colors,

it can happen later in life but as a general rule, it shows up between the ages of 10-30.

After I received the immune therapy treatment I had many bodily reactions, one of them being a rash. The rash was from my chest up and on my lower arms and hands. Everywhere I had the rash I seem to be loosing the color of my skin. Apparently my oncologist was not surprised, he expected it. I on the other hand certainly did not.

The most crippling thing about this condition is the physiological effects. It can bring with it depression and stress and a large suicide rate. Why? Because all of the sudden you look different. You loose the color of your skin, you do not blend in anymore, you stand out in the crowd. You do not recognize the person in the mirror. It is not attractive to the person living inside the skin and other people’s stares and negative comments do not help.

The fact that it is deemed to be an auto immune disorder meaning that your own body is attacking you. Trying to wrap your mind around that and the guilt of why are you hurting yourself, the whys, and how’s and what do I do to stop it, is frankly brain draining and exhausting.

For a while I thought if I had been living in Biblical days, maybe I would be the one having to yell “unclean, unclean” as I walked down the road. They had to do that for leprosy. The initial look can be similar.

Leprosy is a bacterial infection characterized by patches of skin that are lighter than normal but also may involve hair loss, loss of sensation, nerve damage, and skin swelling. In comparison, vitiligo is an autoimmune disorder that is not contagious. Both result in lighter patches of skin.

Looking different can be awkward, difficult and not at all comfy.

We all do it though don’t we? We stare or try not to at the different looking person. Children are wonderful because they are just so honest. I would rather have the honesty than the awkward. My granddaughter holds my arm and says “owie” or sometimes nothing and tries to rub it off for me. I tear up every time at her tender heart wanting to fix grandma.

I have found that people’s mouths engage at “awkward” much faster than other times, leaving me with some unkind statements or statements made rashly without any thought. It is hard to hear a person say “oh I’ve seen that, old people get that.”

Or

“Is that what those liver spots things are?” Or worse.

I appreciated a friend the other day say to me, “does the sun hurt your skin?” It was her way of acknowledging my “condition” with care and concern. It made me feel that she “saw” me rather than choosing to ignore it. It is at a stage of pretty hard to ignore. which leads to awkward. The darker your skin the more noticeable it is.

I find myself wanting fall weather so I can be comfortable in long sleeves and put on more clothes to cover up my arms. (We have been hot here lately).

Your skin becomes much more sensitive to chemicals. So regular hair dye and some shampoos and creams cannot be used without a reaction. I am thrilled that God thought to have me make my own skin care products because they are gentle on my new skin.

I was thinking about the fact of being different and came up with the following: to the person who is billed as different, you know too tall, too short, too fat, too hairy, too thin or too colourful, you fill in your issue. You do have an issue right? If we are totally honest, do you like everything about yourself?

Have you ever said “if only I was ……”

Plastic surgery is a multi billion dollar industry because people want to look different.

You want to be different according to who?

Is there a “normal?”

Whose standard do we need to conform too?

A runway model? A workout jock? Who are we comparing ourselves too?

I know, that me having a skin condition is far better than a ton of things I could name. I am actually very blessed. But each person has to go through a processing phase for their own stuff. I am in my process and have a counsellor to talk to.

My goal is to end up with me being okay with me. That is what I am working towards but right now I struggle.

I know there is no normal and that people have been measuring themselves with each other forever. It is so damaging and I am not immune from this concept as I look around now at other people’s skin.

Thank God that He loves us just the way we are! I do not have to “look” a certain way or act a certain way. He says that I am fearfully and wonderfully made. Psalm 139

It is my job to believe it.