To everyone else, I'm always the pretty black girl with the huge smile. That's my coping mechanism. If the layers were peeled back they'd also see a woman who suffers with an unpredictable skin disease (HS). I was a newly married bride going into life so optimistic until my husband and I discovered this pimple like bump in my groin. I set up an obgyn appointment just knowing we'd get to the bottom of it. Long story short, I had a doctor come into my room and exam me. He immediately looks up and sternly says "Already being unfaithful huh, you have a STD". Needles to say, my husband was hurt and I was left broken. It took me several years to go back again and the disease had progressed immensely. I'm now stage 3 and have seen all the struggles that come along with having a disease that is invisible to the medical profession. Not a day goes by that I don't wonder how long will life be life that I can endure like this. A cure is my only hope. Until then, I'll put on the beautiful black lady with the smile label and fight silently to keep on living.
Today is one of those days where I hate to have HS. My mind is full of negative stuff and I just want to disappear. Today I woke up feeling a little bit of pain and I just know that one big bump is coming don’t ask me how I can tell but I can definitely feel that it's going to be painful.I did my workouts this morning. Today was arms day. My sister and I usually workout together and so I mentioned to her that I had pain so we wouldn’t have to do “too much” or at least not exercises that can make my pain worse. I finished my arm workout, went for a ½ mile run, then went home and did a 30min home workout. I was ok until I started chillin for the rest of the day, and suddenly the bump got BIGGER.
Then later today we decided to go for a walk, and that’s when it hit me, while I was walking, thinking about life and of course feeling the pain so much worse than this morning that’s when I start getting all these negative thoughts on my mind, I start to wonder why I have this? What am I doing wrong in life for me to deserve this? I constantly ask God why me? And I still don’t have an answer for it. Something that I don’t really talk with anyone is about my scars, sometimes my family is like “omg it looks so much better, your scars are getting smaller” but I know they’re just trying to be nice with me and try to help me not be scared or ashamed of my scars but it’s really hard for me, I do think that they’re going to be there FOREVER and that’s what I’m scared of. I know I should love my scars and be proud of myself for how strong I am but it’s something that I’m not proud of because it is one of my biggest insecurities, I HATE THEM.I know I need to be more positive about it and I’m working on that. I can’t wear clothes that I would love to wear because I know I’m not ready for strangers to see my scars.
When I’m having days like this one, I cry really easily, I’m super sensitive and I just want to disappear for a second. Once I start crying I can’t stop and then I go in front of my mirror I see my scars and I cry even harder. Having days like this makes me say things to myself that I know I shouldn’t, I cry all I can, all I want and I try to calm myself which that’s the hard part to do or I fall asleep while I’m still crying but not today, today I decided to write this, my feelings and I’m not going to lying I started crying as soon as I wrote the first word, but now I feel so much better. I know having HS is pretty complicated, you have pain on your body but also with your mind. Having to control both things at the same time it’s hard and complicated and of course stressful. I would do anything to not have HS, but deep inside me I know there’s a purpose for this, I haven't figured it out yet, I don’t know if I ever would but I just hope and pray that one day everything can go away.
I hate having bad days because of all these mixed feelings I get all the time, however I still try to push myself to get up and be the best. Yes I need those 30 min of me feeling miserable and not worthy. Cry all I can so I can let those feelings go away from me. I still have pain, the bump is still here and probably It’s going to be here for the next couple of days and I might get another ugly day like today and maybe it's going to be worse but I want you and myself to understand that this is OKAY! You can’t be smiling all the time while you're in constantly pain or having a lot of scars, It’s impossible we are humans and we have feelings, so having moments like this won’t kill you they're going to make you stronger, You can’t let this disease beat you, you have to beat this disease. So, get up after your bad day and keep fighting stronger than yesterday. I’m sorry if you have days like this or even worse, I know the feeling but let’s keep our hope that one day we are going to be free of pain and scars. Until that day arrives, let's still try to enjoy life. Take care of yourself everyday no matter what. Be your most important priority, WE GOT THIS.!