I want to start by saying I am in no way regretting having my hidradenitis surgery. I also know that there are plenty of people in the world who have HS worse than I do. However, since it’s HS Awareness week starting tomorrow, I wanted to touch base on the emotions that someone like me live with every day. These same emotions can be true for anyone suffering from chronic pain and illnesses.
I feel very alone and misunderstood most of the time. For the 13 years I have had this disease, I have lost jobs from being in so much pain (I have other medical issues as well), been homeless, lost friends, become depressed to the point of being suicidal, and just feel overall alone. One can see my wounds or read about this and still not fully understand unless they have lived it. My wounds are hidden in my groin and under my arm. Because of this, most people look at my face and think I am mad or mean when, in fact, I am just sad and in a lot of pain. I put on a fake smile as much as I can and find myself apologizing a lot for being easily irritated. It’s really hard to be in a good mood when all you want to do is scream in pain.
I am thankful for my daughter, husband, grandmother, and the online support I have. However, if you look up Hidradenitis support groups, there are few of them if any at all. You’ll find plenty for depression, cancer, and the like…but not for HS. There are zero for my area unless they are so underground I can’t find them. If that’s the case, why have them in the first place? I want to do something to fix this. I think a combination of online and in-person support groups helps. Right now, online helps me because I can’t get out of my house.
The pain before and after surgery is exhausting. There are so many fun things I want to do, but I am stuck in bed. I am a little envious of my friends and family who are out having fun. I can’t even use my left arm well enough yet to do much and rely on typing one handed (excuse any errors please). I can promise you I will be getting my hair and nails done after I heal. I deserve it after all this.
Speaking of healing, I keep getting comments even from my spouse that I should hang in there and that I will be fine in a month. Have you seen how deep the wounds are? No, I will not be fine in a month…I will still be healing. I do hope the pain will be less, though. Sometimes, the pain makes me dizzy just laying down. I don’t think people understand just how much pain takes out of a person. I now have a large knot on my left shoulder from the surgery pain causing me to tense up everywhere! I have to practice being less tense. I so wish I could just soak in a nice, hot bath right now. I have tried to lessen the pain too. I have tried wound covered, uncovered, clothes on, clothes off, arm and legs not touching skin, legs and arms closed. Nothing helps.
Pain meds are good, but they bind me up. Not to be rude, but I wish I could go to the bathroom right now. I take a stool softener and it helps some, but not enough. I am lactose intolerant and thought even eating some ice cream would help loosen things up. Nope, not even the usual bowel spasms are happening. I drink a lot of water, maybe prunes are in order? I also can’t handle a full Percocet pill. They make me dizzy and nauseous if I take a whole one of 5/325 mg. I tried just taking Tylenol, but that doesn’t help at all. I can either take half a pill and take the edge off with still pain and no sickness or a whole pill with no to little pain and throw up.
You might be reading this and wonder why I even bothered with surgery. Well, I can either live with constant pain from stage 3 HS for years or pain from removing the 9 lesions for just a few months. I know my HS is not cured, but at least I have a fighting chance if or when this comes back in the future. I have a good team of doctors all ready to help me keep this at bay and treat anything at the first stages instead of trying to combat stage 3 with no luck like we have been doing. By the time I found a doctor to help me or even listen to me OR who even knew what this was…I was already a stage 2 and 3.
You might be reading this and thinking, “Why should we care about HS? Aside from the pain, it’s not like it will kill you.” Well, no, HS will not kill you, but the complications from it can. Infections can turn sepsis, there have been people who waited too late to see a doctor and died of systemic infection. There are suicides over this, heart disease and strokes that can develope from chronic pain, and HS can even turn into skin cancer. Just google “deaths from hidradenitis” and you will see.
HS effects our jobs, sex life, relationships, mental and physical health, and even our finances with all the over the counter wound care we have to buy. I have even been accused of just being lazy because I am not working and have gained 60 pounds in 2 years! You try working with pain in your butt, groin, and arm. I also have scoliosis and arthritis in my joints and back. I can’t sit, walk, stand, or even lay down for long periods. I can’t lift a lot because of my back either. If it hurts to walk or even stand or sit, how am I to lose weight? I had this surgery to have some period of no pain so I can go work out at the gym and take off the 60 pounds. I also am aware that losing the weight will also take the pressure off my back and joints. I also have to add that I suffer from Irritable bowel syndrome and sometimes spend all day in and out of the bathroom. Explain that to a boss and see what they say.
People who deal with chronic pain and illness are, hands down, warriors. Please try and understand our illness and help us instead of pushing us to the side or judging us. Be kind to us. We are trying, I promise.