When I have been honest with people about my times dealing with HS, they always ask how I deal with the pain that comes along with it. What people don't understand and the part I rarely talk about is the mental health effects of HS. The pain I can handle (to a point) it's a physical thing, so I can try and override the pain... Try and ignore it, take painkillers, try and numb the area, you get the idea. All of this leaves scars but not just on my body.
There has been a lot of media attention focused on mental health awareness in the past few years and rightly so, with that in mind I would like to share my experiences in hopes that it may help others feel not so alone!
Living with HS, as I have explained, is extremely painful and when you live with that day in and day out it can weigh down on you and make you feel as if you are fighting a losing battle. You can wake up with a positive attitude and go to sleep beaten and trodden down. When this is your whole life, it is very hard to keep waking up positive. Some days it is damn near impossible to get up, knowing what is coming is just going to be more pain and more struggle, why would you want to start your day when that is that is waiting. The few people I have told this to have asked why not just go to the doctors and get medication? Well, there are two reasons.
Reason number one, I didn't feel I deserved it! Why would I go to the doctors and take an appointment away from someone who really needs it? The doctor would just sit there and think why is she here? There is nothing wrong with her, she just needs to deal with it.
I would think that there are so many people out there who need to speak to a doctor a lot more urgently than I do so how could I justify taking their place. And Believe it or not, that stopped me going for a long, long time. I could deal with this I just had to get a grip and deal with it! Everyone had it rough so why was I crying on about it? I was just being dramatic and weak!
Reason 2 was that when I did go to the doctors they told me that they were reluctant to prescribe me the medication as I was too young (19) and they would prefer it if I tried breathing and relaxation techniques and exercise. Which okay, might work for others but when it had taken me a couple years to get the courage to visit the doctor, believe me, I had tried every relaxation and breathing technique out there and was doing exercise and seeing no benefits. When I finally spoke to a doctor who listened to me I was prescribed medication that helped me cope and get through that hard time in my life. It did not happen overnight and at some points, I felt like it never would but thankfully it did! Thankfully!
Coming out of that dark place felt great but unfortunately, although my depression had gotten better I was left with feelings of anxiety. When speaking with friends who have anxiety they all explain how they feel in different ways and have different triggers. I believe thankfully mine was/is not too bad but I would like to mention it anyway.
When I had entered into a better mind frame and decided I was going to try and have as much of a normal social life as I could, one of the main things I wanted to do was go out with my friends, as every teenager does. Going to the movies, out for tea or just out looking around the shops. But I had a tendency of pissing people off with being late. Still, to this day, it is rare that I get anywhere on time and half the time (not all of the time) it is due to me being very anxious. Other times it's simply because I slept in or got caught up watching TV or something else that is completely avoidable. But sometimes it is just because I am far too nervous to leave.
For example:
If we made plans to go out with friends the next day, almost immediately after making these plans I would start planning what clothes to wear. Might sound like a normal thing to do for a girl but I don't mean what would look pretty. When I plan what clothes I am going to wear it kicks off a whole process. I have to make sure that they fit perfectly, they cant be too tight in case it irritates my skin and causes a flare up when I'm out, they cant be too loose in case someone can see scars, they 100% cannot be a light colour in case I bleed on them or if an abscess drains in public and everyone sees. I cannot wear anything too short or too long because if it is too long I could trip over it and rip what I'm wearing and someone might see scars. Or worse I could trip over it fall and someone would be helping me up and the skin on one of the abscesses might rip and ill cry out. Also whatever I wear cannot have short sleeves because of scarring and too many people looking.. etc etc.
This thought process is the first step in the nightmare that goes on inside my head when I agree to go anyway. This will continue on, second, third and fourth guessing myself over and over and over until after we have come home from whatever we had plans to do. It is mainly why the people who know me will rarely see me out of four particular outfits. Because I know those and I can trust those, nothing bad is likely to happen in those outfits. but I cannot remember having these thoughts before my HS got worse. I am not too sure whether this would be classed as anxiety but I have to do this every time to make sure I have every basis covered so if something goes wrong I'm prepared. I might just be a worrier, but when I don't get a chance to do this if I have to leave before I can triple check what I'm wearing it is hell! I feel like there is a neon sign above my head pointing down at me and that people are looking at me, I can't stop fidgeting with my clothes. I am constantly excusing myself and checking my clothes over and over to see if I have burst an abscess. I am praying that the movie goes fast and that no-one is hungry so I can rush home and get out of the clothes for ones that I should have worn. I am constantly agitated biting people's head off for no reason. Becoming snappy and just generally unpleasant to be around until I can get back home.
And that is why, unless I am with people who I trust, completely. Enough to look after me if I need it or understand if I need to leave, that I try not to leave the house.
I know it may not be the healthiest choice, but it is the easiest. And for now, at least, im taking the easy way..
Thank you for listening, I hope that this might help someone out there maybe feel a little less alone... I thought it would be terrifying posting this and I will admit I'm nervous but it does have a sense of relief finally getting it out. I would just like to add this link to the local Samaritans website. The Samaritans are a great charity that do fantastic work! So please go and have a look at their website.
Thanks,
XOXO
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