Chicken soup for the soul did not prepare me for this

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I am a seventeen year old girl who is ackward, depressed, anxious, and has hs. But I'm totally normal. Thats what my therapist and parents say. 

I have a home and a dog and a sibling. I have food in the fridge and clothes on my back. Why do I complain? Thats what my therapist wants to say to me when I tell him that looking up hs online will scare him. His responce was, nothing could be worse than war. While I agree with that statement 50% percent of the time, this isnt apart of that 50%. This is my life, my struggle, my sleep interupted because There is blood and puss in my underwear. This is me at my weakest moment. Don't tell me there is something worse than this because to me this is death, this is my mother telling me that it's just me being unclean and overweight, this is my youth being spent called fat, large, whale, useless, forgetable, dumb, idiotic, stupid, worthless, and (my personal favorite) too fat to be kidnapped. This is me crying in the middle of the night becase I feel incapable of reciving love and having intamacy. This is me yearnign to have some one to talk to me, to call me beautiful for once in my life and really mean it. This is my struggle to think that one day I will be able to hold hands with a guy I like and to have my first kiss, to have my first of everything. This is my struggle to remain sane because I have to deal with people who think that they have a tougher life and deserve more than me. This is me wanting to wear a short skirt once before I die and not be ashamed, to raise my hand in public with a short sleeved shirt and not want to cringe when I realize that some scars are showing. This is me not wanting to wake up in the morning to see the mirror and realize while I dont have any boils today that I get to see the old scars that will never fade away. This is me not being able to trim or wax my private parts because heaven forbid I touch sensitive skin prone to flare ups. Thsi is me not being able to touch myself because evrytime I try, I just look at myself and begin to tear down my delf esteems again. This is me thinking that I have to lose weight to ever think of myself pretty and having to plan for elective plastic surgery in the future. 

So don't tell me that my struggle is any less than someone else when you havent had to look at yourelf and really questions if you should even live because who would care if you really went away. When even your own family blames your for everything little boil that pops up.

When you do all this then come and tell me that I have nothing to worry about, that one day I will be ale to dress like a normal teenager and be happy. 

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4 Replies

  • Posted

    Hi

    Im so sorry that you living with this nightmare and feel it with you. I'm a mother of 2 boys and been divorced for years now. And have HS since 10years old and my ex told me one day thank heavens i dont need to deal with your #%'* between your legs..it broke me and ive been struugling to get over the feeling of just wanting to be normal. And feel loved. I hope someone someday we get a cure for this.

    Your are beautiful dont forget that!

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  • Posted

    I actually found this quite hard to read because this is exactly how I feel. I mean EXACTLY. I'm 24 now but when I was your age my best friend's dad died of cancer. She was plunged into a horrible depression and then was also diagnosed with chronic fatigue. She couldn't get out of bed and when she could her moods were erratic and she was crying constantly. I took it upon myself to be her keeper and slowly but surely bring her back into the world, but it meant that every time we were together we were talking about her and I couldn't very well talk about my insignificant problems while she was dealing with so much, could I?

    Now I don't wear short sleeves. Ever. I've just cycled through 3 different antibiotics - none of which worked. And I simultaneously have a bad muscular problem in my hip which means that I also have intense chronic pain that can't be relieved or even rested. But I still feel like I'm not allowed to complain because there is always someone worse off. My problems are insignificant. But they're mine and I'm the only one that is ever going to have to deal with them. I was talking to a pharmacist about my chronic pain doing my usual "oh it's not really so bad that I need all these extreme treatments" while I'm limping across the shop and cringing in pain. The pharmacist told me something that I've been repeating in my head ever since. She said "all pain is relative. You can take the pain and suffering from one person and put it on the next and they won't be able to deal with it. Put it on someone else and they'd be fine."

    Self care is so incredibly important. It's really easy for things to get out of hand quickly so you have to pay attention to your body and don't discount what it's telling you. If your body says it's in pain, it's in pain, regardless of what someone else's pain might look like. Your pain is relative to no one but yourself.

    HS is so hard because it's a hidden disease and no one really understands what you're going through. The social and emotional aspect is really difficult to deal with. You just have to remember that not everyone can really understand empathy. I remember seeing a post online that said something along the lines of "if you see someone wearing a thick sweater on a hot day in summer, they have a reason for it". I always remembered it because I have to wear cardigans when I'm working as a bartender in a hot and sweater bar because my work t-shirt is short sleeved and not only do I have cysts and scars but I also can't properly shave under my arms. I've had coworkers tell me countless times to take my cardigan off when I've said it was too hot in the bar - No, because I can't. They actually know that I get cysts under my arms, but they don't really understand.

    This is gonna make you roll your eyes and you're probably going to reject it outright but my biggest advice is honestly to join a gym. I know, I know, no one likes being told to exercise, but I recently lost two stone of weight and gained a lot of muscle as well. I went from feeling like I couldn't keep up or keep anything under control, or even get out of bed and out of the house, to feeling strong and capable. It helped me to get into a better daily routine and the sweating profusely then showering combo is really great for HS because it clears out your pores to stop them being clogged up. There are so many different sports and ways to exercise that it's just about finding that one thing that makes you feel awesome. I thought I would like running but I changed my mind quickly and got into strenght training with free-weights instead because it made me feel like a damn badass. It made me feel better about the prospect of any kind of intimacy as well because it really put me in control of my own body and made me see it in a much better light. It greatly improved my well being, so don't discount it. I would say though that to get into a pattern with it you need to be doing it at least two or three times a week, otherwise I get lazy and can't be bothered moving. It's hard when you have pain like this but it's not as impossible as it may seem. There are exercises for everyone.

    I'd honestly fire your therapist because that is not helpful and you do not need that.

    You're not alone!

    All pain is relative.

     

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  • Posted

    I am so sorry you are going through this and with no support. It frustrates me that people don't take the time to educate themselves on this disease before assuming it's nothing just a boil. I have had HS for 14 years it's such a terrible disease and so painful. I am now taking Humira to see if it will help I pray you get the help you need but please believe you will find someone to stand by you and get the help you need. Please stay strong and you are a beautiful person inside and out never doubt that.

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  • Posted

    First of all, please get yourself another therapist if at all possible.  This person clearly is not trying to help you.  If you don't feel comfortable joining a gym, set aside time for exercise--not necessarily to lose weight but to boost your mood.

    I can't tell you about HS getting better, but some of this social, self-esteem related stuff usually does--not perfect, but better.

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