Since I have met other people with HS, I have come to the conclusion that there are many differences among the different people suffering from HS.
In my case, the wounds have been a problem for about fifteen years in an area on the right side of my buttocks. The wounds have not appeared in any other area.
Many of my friends and family members don’t understand my disease or the pain associated with it, and don’t understand why there are many activities that I cannot take part in because of my HS.
Luckily, when my condition reached the point where I was not able to do many of the things that an employer would expect of me, I was already retired.
The sores I get are usually under my armpits, hindering my range of motion. My pain is greatest when the boils first develop under my skin. It usually takes a week or two for it to come to the surface and break. When it breaks, I experience a burning sensation as the abscess drains. After the open sores have settled, my pain dissipates for the most part. There are still instances where it hurts, such as when I have to overextend my arm, but in a normal setting - with my arms down - I don’t have any pain unless I develop some sort of infection.
My life has changed in that I have found ways to not have to extend my arms to the point of pain. I have moved everything down to a manageable height, particularly with kitchen cupboards I’d have to reach up to daily.
I have found the best way to manage my pain is to keep the wound area clean and dry , and to try not to have a Superman complex. The fact of the matter is, you can’t do everything you once could. Once you accept that, and realize all of the things you can still do, it becomes far easier to manage.
The most painful part of the condition for me is when the abscesses have formed but have not yet broken the skin. I usually get them under my armpits, which drastically reduces my range of motion. When they first break through the skin there is a burning sensation, but once they’re open and have settled there is little pain. I have what has been determined as a mild case of HS, so my lesions at their worst are usually no bigger than a nickel. Occasionally they’ll get inflamed or I will get a small infection and the pain will return, but for the most part once open, there’s little to no pain.
One of the worst parts of having the open wounds is that they have an odour similar to rotting meat. It might not be strong but it’s something, I for one, am very self-conscious of. And there is always a discharge similar to mucus coming from the wounds.
Personally, meeting others with the same disease has been the most positive thing to come out of having HS. Having someone to talk to, and who understands exactly what I’m going through, has been incredibly beneficial for my peace of mind.
When it comes to HS, I wish people would better understand that this disease not only affects people physically, but also mentally. It stops us from doing something as simple as reaching for a glass in a cupboard. And for those of us with severe HS, it can prevent us from walking or even sitting down without pain.
This disease can also be embarrassing. There is often an odour associated with open wounds that causes me, for example, to withdraw from people for fear they’ll smell it.
Having HS can be very frustrating. It’s very difficult to control outbreaks, and the mental and physical toll it takes can be exhausting. Seeing a dermatologist helped me with the healing, as well as to understand the disease and to be aware that it’s something many people have. I'm not sure what others think but personally, knowing I am not alone is something that gives me courage.
I didn’t have to go searching for a dermatologist who specialized in HS. I happened to be referred to my dermatologist for wound care and lucked out in that he specialized in HS. Until my disease put me in the hospital, I went undiagnosed and couldn’t find any easily available information to help me determine what my lesions and abscesses might be.
Social isolation is often a consequence of HS. Frequently, the smell, my pain, and my limited movement have caused me to withdraw from social situations. Depending on the severity of my lesions, I choose not to attend group functions when the people are unfamiliar with my disease or there are people I'm going to be meeting for the first time. I have been incredibly fortunate to have a very understanding family and group of close friends. If you don’t have a group of people around you like I do, there are several Facebook groups where you can contact and interact with people who share our disease.
I first met other patients with HS when I was part of a focus group. Until that point, I’d never met another person with the disease. We sat together and shared our HS stories, how long it took to get diagnosed, what brought us to this point, and our failures and triumphs. It made me feel like I wasn’t alone. It is such a simple, but empowering thing - to know you’re not suffering alone. It made me feel strong. And I left knowing that, should I so choose, I could reach out to those people and they would understand more than anyone else the trials of having HS.
HS comes with many challenges. It can be quite painful at times, as well as embarrassing. It hinders your ability to join in normal activities. For me, swimming is such an activity because my family spends much of the summer at the beach. As someone with HS, I don’t like to go because the potential for getting sand or some other debris/bacteria in my open wounds is too high when swimming in lake water.
I would have to say that the support of my family (my aunt, uncle, father, mother and grandmother) has been tremendous. Without their support, both emotional and financial, I do not know where I would be now. My family has been there 100% for me through all of this, even when I was living in a different province. I believe its very important to have people who understand and support you in whatever way is best for you, as everyone is different.
From a medical standpoint, I think that my dermatologist has been an amazing source of support for me. I am lucky to have found a doctor who is fully aware of this disease, which has honestly been a “lifesaver”.
I would like to say that I think my biggest supporter is myself. At times I wanted to give up, but I always pushed myself to continue. I think you have to stay very positive when living with this disease, even though it can be very difficult at times. It can be very challenging, but I try my best not to get down on myself. Keeping a positive attitude even when I felt like giving up has gotten me through my very worst days.
The notion of social isolation touches me deeply. I made the choice to move away from all my family and friends not long after I developed this condition. I guess you could say I didn’t want to burden anyone and my way of coping was to deal with it all alone, which in the long run was probably the worst decision I could have made for myself. I battled severe depression, lost my social skills and just never wanted to leave my house. Even when I wasn’t having a bad day HS-wise, I was so depressed, sad and emotional that I couldn’t carry on my lifestyle like I had in the past.
The social isolation that I experienced affected me in so many ways, from relationships with my boyfriends, friends and family to just not even feeling like myself anymore. I felt like I was living in a different body, both physically and emotionally.
I came to terms with the fact that I was “gross,” always smelled, and had scars from head to toe. I felt so ugly, so worthless and that I would never amount to anything! I WAS SO WRONG!
The turning point for me came when I realized that I needed to discard these feelings, and I made the choice to change the direction in which my life was heading. This disease was pulling me down and it was time for me to turn things around.
For most of us, stress is a trigger and you may not realize it, but the longer you hold all that hurt and pain inside, the more stress it causes. That’s why I feel it is so important to reach out to someone, even if it’s just one person, and if you don’t feel comfortable with that, even just writing down how you feel can help sometimes, and hopefully give you the courage to eventually talk to someone.
I reached out to my family and moved back to my hometown, where I received the support that I needed. It made me realize that I was not alone and that there was so much love around me; I had just pushed it all away for so long. I know not everyone has a strong support system of family and friends, but there are places and people you can talk to and again, reaching out to even just one other person living with this disease, or a professional who knows something about it, can make a world of difference. When you feel at your very worst, just remember: you’re not alone in this! Thanks to modern technology, you are just a text, phone call, or email away from another person, and I feel like the best way to break that isolation wall down is to push yourself to be more open about your disease. I used to be so self-conscious of my scars and sores or even about telling anyone that I had HS (because let’s be honest, it’s not an easy one to explain), and now I show them freely because I know that HS has made me the strong person I am today. If nobody ever shares what they are going through, then how are we ever going to find a darn cure for it.
My past experience meeting with other patients living with HS has been eye opening to say the least, and at the same time very bittersweet. Living with this condition, you tend to feel very alone, and after meeting and talking to even the handful of people I have in person, it has made me feel a little more at ease with myself. It’s as if you automatically feel like you’re all family in some way.
The fact that I’m not alone and there are people who know exactly the pain I am going through tends to put my mind at ease, in that I’m not as “strange” as people tend to make me feel. It is very hard at the same time to know that all of these people are going through the same things on a daily basis that I have gone through or am still going through. I definitely think that it alleviated some stress and my feeling of being alone.
Like most people living with this disease, I want everyone to understand how debilitating and painful this condition can actually be. I’ve heard people whisper things like “Oh, it’s just a big zit” or “maybe if she was skinnier,” and those people don’t understand how hurtful that truly is. I would NEVER wish this disease on anyone else, but at times when I was at my worst physically and emotionally, I wished for just a minute that those people would feel the pain and embarrassment that we face every single day. We are hard enough on ourselves; we don’t need others making us feel even worse.
It’s really important for people to understand that the disease is not contagious! We already have enough emotional issues in dealing with it on our own; we shouldn’t have to feel like outcasts, or that we have to hide or explain ourselves because of our sores or scars. Yes they look horrible at times, but obviously we didn’t choose to have them and we can’t control when they come or go. We have to deal with them every single day. I used this example a while back…if you see a girl walking down the street with burns all over her body, would you stare, ask her if she was contagious, or ask her what happened? Laugh at her? No, probably not! Well then, why do that to people living with HS?
I would like the public to be more aware of what HS actually is. I mean, I can’t even count how many times I’ve been in the hospital and a doctor or nurse walked in and had no idea what HS even is, let alone how to deal with it! Needless to say, besides my GP and dermatologist I will not see anyone else for my condition, because I am so tired of trying to explain myself or treat myself, and of being belittled as if I am making my condition seem worse than it is. If people were more aware of the disease, as is the case for so many others out there, maybe we would have a better chance of finding a cure (through more research and funding). Maybe more healthcare professionals would research it, which in turn would cause less people to be put on medications that do nothing to help or, even worse, just being turned away and being told “we can’t do anything for you”.
I think one of the “breakthrough” moments for me would be seeing a doctor in the small town I lived in at the time, and his response to me being covered in sores and in a tremendous amount of pain was, and I quote: “You are fat and overreacting to acne” (stage 3 HS). At that point, I was on long-term disability and had lost all my relationships and self-worth. From that point on, I was determined to make a change and I started trying my own methods. Over that year, I lost almost 100 pounds (aquafit mainly and just watching what I ate) and I would like to make a point of saying that my condition stayed the same even after that weight loss. I then decided to move back to my family and friends, and realized that a larger city with better healthcare was the best option for me. I met an amazing dermatologist who has been a tremendous aid for me. Most importantly though, I think I have discovered my own triggers over the years. Stress, things I eat, my environment, etc… everyone is different, and the most important thing to do is to try to stay as mentally strong as you can, because in the end, you truly are the only one who is going to be able to push through this stupid disease.
I believe that the first step in HS is to find a doctor who has experience with the condition. I found that I needed to be very clear with my doctor that I needed to see a dermatologist. I made sure that my dermatologist had a solid understanding of my symptoms and flare-ups.