Just to update you, for those of you who are just jumping on-board, I had my first flare in three years back in January of this year. It was a fairly minor flare and consisted of a couple dozen ulcers on the inside of my lips. It still was very painful, of course I was tired, and my mouth looked awful, but it was nothing compared to what it was three years ago when my immune system was out of control. THEN in February I battled some upper respiratory infection basically all month. Granted, I was much better off than some people in the office - we had people with Pneumonia, Bronchitis...it was crazy in our office!
THEN in March I had my second flare. This time my mouth wasn't affected, but my skin was and this was the worst case of skin lesions I had ever had. I looked like I was covered in large chicken pox. They itched and were painful just like chicken pox too!
Now it's mid-March, and I finally physically feel like I am progressing to some sort of normal state. My upper respiratory infection is gone, I'm not fatigued, and I haven't had any more sores pop up on my body in the last week. But emotionally, I'm a roller coaster of emotions. I've never been sick for such a long period and I'm a little depressed because of it.
Even though the arm lesions (a symptom of Behcet's) are out of my control, I can't help but be embarrassed about the way I look. I feel like I look dirty/unkempt, or like I have parasites, or a REALLY bad case of fleas. Because of the way I feel about myself, I assume others who see my hands and arms probably think I am dirty as well (or worse that I have a drug problem). The fact that I am worrying about what total strangers think about me based on appearance is a first for me, and only adds to my frustration. I'm not what you would call insecure or shy. I personally try not to judge another on looks alone and believe others should do the same. But in my case, I don't blame them if they are alarmed by the way I look. I would probably think twice before rubbing arms with me - I look contagious.
So, I'm having a down day. I actually had a down day yesterday...and I might have a down day tomorrow, I hope not, but it's hard to tell. I'm just so frustrated. I'm frustrated because the lesions that Behcet's has caused on my skin are causing me to withdraw from activities I would normally participate in, another first for me. I've never been the kind of person who sits down in defeat, I always push forward. A broken toe? No worries, I can still compete. A black eye (from a fainting incident)? Nothing a little make-up can't cover up. A REALLY bad haircut? Eh, it will grow out. Seriously, nothing has ever stopped me from doing what I wanted to. Behcet's is the first and because of that I feel so utterly defeated.
Actually, now that I just wrote that I just realized something, I am letting Behcet's get me down. If I physically feel good, then gosh darn it I should get out and enjoy myself! (I am woman with Behcet's, hear me roar!) Let others judge me...I'm sure people judged my bad haircut and my black eye (no amount of make-up can cover a black eye). If someone asks whats wrong with me I'll take the opportunity to inform them about Behcet's. I can't keep dismissing my friends and family because they are a very important part of keeping my spirits up and providing support.
So my mind is made up, I'm not going to sulk, I'm going to hold my head high, and I'm not going to let Behcet's get me down! I know staying positive easier said then done (one look in the mirror and I'll be back to sullen), but once I put my mind to something I'm going to see it through...so here's to a good mood (and no mirrors)!
On a side note: I want you to know that we all have bad days, and depression is a real concern when you have a chronic illness (something I always keep in mind). Just know that you are not fighting this alone. You can go on any Behcet's blog and see that we are all riding this crazy roller coaster of Behcet's. We might be a small group, but we can provide tremendous strength to one another. On days when I feel really down and alone, I remember this and it helps me feel better.
Cheers!
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