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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think that my acne is a chronic illness?

137 replies

seemenowlater · 14/06/2021 06:06

It ruins my fucking life. I have really awful cystic acne. Everybody thinks it's just a cosmetic issue, that aspect is absolutely awful and debilitating in itself. People in public are disgusted by my face. I get bullied. People think I'm disgusting and dirty and assume that I don't wash. I've spent so much money trying different products, I've tried everything. I probably wash my face more thoroughly than most people do. That is agony though, anything with antibacterial properties causes severe stinging. I am trying to get a job in retail and am not getting any offers, and I get why. I look fucking disgusting so why would anybody employ me in customer service? Kids stare at me. I've never had any public comments but constantly imagine them saying "Mummy, what was wrong with that lady's face?" and I hate it.

But the pain, oh my god the pain is horrendous. It's on my back and face. I lay in bed crying sometimes because when I'm on my back I'm constantly putting pressure on the cysts, I wake up and my pyjama top is marked with blood and pus. My face bleeds all day. When I take my face mask off, it's covered in blood and pus. I have considered trying to get the exemption lanyard because masks rub on the acne causing open sores and make it much worse. When I worked in an office it was constant "Your face is bleeding" from colleagues. I'd be sat at my desk dabbing my face with tissue to stop the bleeding. I get it on my lips and round my mouth. The lip ones are so, so painful. My bottom lip will swell up, it looks awful and is agony. Eating hurts, drinking hurts, talking hurts. Right now I've got an awful one on the side of my mouth and if I open my mouth too much when talking then the scab opens and it bleeds into my mouth, it keeps happening and I've had it for 2 weeks because it won't heal. I also get ones on my cheek etc that have the scab break when I talk. I get it on my earlobe and sometimes inside my ear, when it's on my earlobe sleeping on my side is incredibly uncomfortable. I get horrible styes that go inside my eyelid and quite far up the eye, which are horrendous because I can feel it all the time. I get them around my nostrils, they absolutely kill. When I get them on my eyes, nose and mouth I'm always terrified the infection will get to my brain because those particular areas are closely connected to the brain.

Sometimes, my face is simply so overrun with cysts everywhere that it hurts to use any facial muscles at all. Sometimes I just want to kill myself. Whenever I try to vent to family and friends though, nobody gives a shit. "We all have cosmetic insecurities" they all say. They need to try living as I do because it's unbearable. My aunt has a common chronic illness and once used it in a conversation with me to argue that I should be grateful that my acne is all I have to worry about. Other people think it as well, "Oh the poor love has acne, boo fucking hoo.". I'm not claiming I have it worse than those who can't walk etc, obviously I'm lucky I have full mobility. But this still ruins my life, I can't help it and I'd give anything to stop it.

Even articles about it make me feel even shitter. It's all about how some celebrity had it and suddenly had the confidence to post pictures of it without filters. I saw a vile Daily Mail article stating how brave a celeb was for showing off her "horrific" acne. These articles just go on about it as a cosmetic thing, nobody seems to consider how utterly painful it can be.

OP posts:
RubyGoat · 14/06/2021 08:42

I sympathise OP. I'm 40 & I've had acne since I was 11. At the moment it's not too bad but I've had 2 courses of roaccutane, which helped a lot. It's not completely cured it though, so I'm back with the dermatologist again, & also a dietitian for suspected food intolerances due to the state of my skin & also chronic IBS. they are hoping they will at least be able to get one of them under control. Currently I'm using Differin cream on my face & Epiduo on my back, they do help a little bit, if they don't work well enough it willbe the roaccutane again. I tried removing wheat & dairy from my diet previously but it didn't help, there are other triggers though. So we'll see. I previously tried the combined pill but it triggered severe migraines which didn't stop when I came off the pill, so that was no good.

Do insist on a dermatology referral. It's significantly impacting your quality of life. Your sleep, job prospects, mental health, relationships etc - tell them that, thell them why & how. If they won't refer you, ask for a specific reason why not. I bet they'll be reluctant to give you a reason.

RubyGoat · 14/06/2021 08:49

Regarding vitamin B - certain elements of vitamin B are linked to increased incidence of acne inflammation. Apparently B6 & B12 can increase acne, so I'd steer clear of any supplements that have a high dose of that. I used to take a high dose B complex for my migraines, it had a lot of B6 & B12 amongst other things, once I found this out I switched to a different version & my skin calmed down slightly.

Mumblechum0 · 14/06/2021 08:56

I’ve PMd you, OP

troobleflooble · 14/06/2021 09:13

I don't have acne but I do have rosacea and so while it's not as bad as yours I totally sympathise.

When it's bad my face feels like it's on fire. It burns, is intensely itchy and I get clusters of spots that look very much like acne. It looks awful and can be really painful. People ALWAYS comment on it if I'm not wearing make up and it really gets me down. When I'm having a flare up I genuinely don't want to leave the house or talk to anyone because I feel like everyone is staring at me.

I starting taking pictures of it when I'm having a flare up as inevitably I would end up having appointments when it wasn't that bad. The first time I did this and showed them I got a prescription for Soolantra, which is great for a lot of people but unfortunately didn't do much for me. I've tried a lot of different things but with no luck, next step is a dermatologist referral.

Annoyingly one of the biggest triggers for it is stress! So it's a vicious circle because I get stressed because my skin is bad which makes it worse.

Don't feel bad about asking for help x

weirdphobia · 14/06/2021 09:22

I'd also push for a skin allergy spot test to check for skin contact allergies.

It's totally different but all my skin hurt for years. I didn't realize this wasn't normal. Turned out I'm allergic to loads of common ingredients in eg washing power, soap, moisturizer (even many of the prescription and hypoallergenic ones). I cut products out containing the offending ingredients and got great relief!

MsHedgehog · 14/06/2021 09:26

OP I agree with others. My friend was very very similar and she saw a dermatologist. She didn’t take roccutane so there are other options. She was prescribed antibiotics for a number of months, and then went on to yasmine. Her skin is now really good and when she wears make up it looks flawless.

Her GP was useless, but the dermatologist made a huge difference!

Tryingandfailing · 14/06/2021 09:28

I totally relate to what you describe. The pain and embarrassment and constant impracticality of having severe acne!

If you havent been referred to Dermatology, you have to push for it. Your GP has to try all the things that work for people with mild acne before they refer, it's just the rules. Dont let things not working put you off! None of the topical gels or creams worked for me, nor did the mild antibiotics the GP gave me. Not one bit!

If you get referred to Dermatology they might put you on Roaccutane, this drug is intense but will clear your acne. It is supposedly permanent but for me the acne returned because I have PCOS so the route cause of my issue wasnt resolved.

Eventually I was referred to a dermatologist again and i now take spironolactone and my skin is 100% clear. I was 29 when I was prescribed this (roaccutane when 16), having had acne since the age if 12. So it just goes to show it can be a long journey. I thought I just had to accept it, but I was lucky to have a GP who, when I went about a different issue, brought it up with me. I now wish I'd kept badgering doctors earlier!!

Be persistent with the doctor. This is not cosmetic, it is painful and impacts on your quality of life.

therocinante · 14/06/2021 09:30

I feel you, OP - I've had cystic acne for 15 years and people think you're being dramatic when you say it hurts to move your face (not like, it's a bit sore, like genuine cry out in pain) and it's unbearable. The itching, the pain, the infections... it's all horrendous.

I'm lucky that it's mostly my face, but as I can't take roaccutane there aren't any real options left for me and the dermatologist has taken a 'maybe it'll improve?' approach, which is fucking useless. I begged them to let me sign some kind of waiver to be prescribed roaccutane and pay privately for some kind of regular MH check in (I can't take it due to the effects on mood and my history of depression) but they said no.

ChangePart1 · 14/06/2021 09:34

I’m so sorry OP. Of course it’s a chronic illness. Many people don’t realise acne isn’t ‘just’ cosmetic and can be incredibly painful. Even if someone doesn’t have pain with their acne the social impact of being treated differently is awful and can be debilitating in itself. People are happy to be supportive if someone has a facial disfigurement, but there’s the perception that acne is a short term mild teenage thing that will pass and severe cases are often not recognised as having the huge impact on your life that they do.

Your post is really helpful in educating people about how bad acne can be and the many ways in which it affects your life. So, you’ve done a really good thing in sharing. I really hope you are able to find some improvement soon, you sound so strong but utterly sick of it, as anyone would be.

ArabellaStrange · 14/06/2021 09:34

Going on personal experience only, the Vit B supplement has helped me.
Which is Healthspan High strength vit b complex.
Vit B1 20 mgs, Vit B2 20mg, Vit B3 20mg, Vit B5 20 mgs, Vit B6 10 mg, Vit B12 250 ug, Biotin 50ug, Folic Acid 400ug, Choline 200ug, Inositol 20mg and PABA 20mg.

kat8919 · 14/06/2021 09:40

Third time on roaccutane here and wow what a difference - I have a life.

But I get it, life with acne is shite.
I sobbed and begged my dermatologist to put me on roaccutane.
I was weeks away from causing serious harm to myself if I struggled any longer.
I sobbed everyday on the journey to work.
Once at work I would spent my lunch breaks in the toilets.
I avoided every possible family gathering.
I have no friends as I couldn't bare to leave the house and meet any one.
I begged my boyfriend (now husband!!) (met pre-acne) to leave me as I felt so embarrassed for him having to be associated with me.
I spent my days off hiding under my duvet.
The list goes on.

I get it - it is so so so shite.

But it can get better - please keep pestering your doctor.

iGetPipAndWork · 14/06/2021 09:51

I have physical and mental illness, one of which is psoriasis (an autoimmune disease and whilst not painful, it's horrifically itchy and looks a bit like ring worm so I get treated like a leper at times).

Your relatives have been asshats. If it's so severe it's affecting your sleep due to pain levels and you're bleeding all over - that is absolutely serious and not just "cosmetic". The impact of people treating you like a leper socially and mentally is awful.

Your skin sounds so inflamed, like I said my disease is different but sore broken skin being scrubbed raw with harsh products sounds super painful. A gentler non irritating cleanser like cerave might be worth trying to let your skin heal a bit but I'm not a derm, just a skin care "enthusiast" with very sensitive damaged skin.

If you can manage private costs please consider a private derm, You can have a consult and then transfer back to NHS but it will get you in faster :). For your rude relatives maybe try the MN fav "did you mean to be so rude".

Littleheart5 · 14/06/2021 10:10

Roaccutane, the only thing for it. Pay for a private dermatologist’s appointment. By the sounds of it you should be on a very high dose. I’ve been on it myself, don’t mind all the side effect warnings, the benefit of good skin outweighs them all

chocolateoranges33 · 14/06/2021 10:12

I echo everyone else who says roaccutane- it changed my life. I was referred to a NHS dermatologist twice - once in my teens and again in my late 20s. Was presribed roaccutane both times and it made such a difference. Please ask your gp for a referral as it will make such a difference to you. Good luck

somethingischasingme · 14/06/2021 10:20

My dh, his db and my best friend had awful cystic acne when they were teenagers. My dbil used to be so embarrassed as the cysts would leak through his school shirt. Both dbil and DJ went on roaccutane. It did work but unfortunately they did both have quite a serious side affect so do be careful. My bf went on the pill.
However, now I have my own dc, I have found that their spots clear up when they avoid dairy and wheat. There is coeliac in the family and both had cmp allergies as babies. So it might be worth seeking support from and allergy specialist too. Good luck op.

Pewpew · 14/06/2021 10:24

I admit when I read the title, I was intrigued as to why you thought of it as a chronic illness, now reading what your life is like I 100% agree with you and I have CI myself. Flowers

Bedtimeforever · 14/06/2021 10:37

OP please try to get referred to a dermatologist. Sometimes Roaccutane is the only solution but it is so worth it, given the amazing results afterwards. I had absolutely no confidence to leave house without makeup and constantly felt really bad about my skin but it cleared very nicely in 6 months and if you haven’t tried it already, I suggest you do.

vixeyann · 14/06/2021 11:11

I feel for you so much reading this. Been plauged by acne since I was around 14 and the impact is huge. My mum used to tell me how minor acne was compared to real problems like people dying of illnesses and it's so common for people to minimise it in this way if they haven't suffered themselves. I'm nearly 40 and still have a thing about my skin and never go without make up. I have had three rounds of roaccutance in that time period and it is the only thing that works. I now have relatively average skin with some outbreaks but it has seemed to have kept it on an evenish keel. Dianette was great for a few years, lovely skin but when I had to stop taking it, it bounced back so much worse into the painful cysts you describe. Please demand a derm appointment, please don't be fobbed off. You should not suffer like this xxx

JovialNickname · 14/06/2021 12:29

You poor thing, that sounds absolutely horrific and in my opinion absolutely is a chronic illness (chronic = over a prolonged period of time, illness = a malady that seriously affects your quality of life.)

In my younger years I had the kind of acne that felt and looked like marbles under the skin and my god, the pain. It's not nothing and it's not "just" acne, I feel for you.

Wolfiefan · 14/06/2021 12:35

You definitely need a dermatologist. I developed a real issue on my face that GP couldn’t sort. Saw a dermatologist who got to the bottom of it.
I’m on some serious drugs now but the relief of not waking being stuck to the sheets with my own blood and not wanting to rip off my own burning skin? Bloody awesome.
Good luck OP.

ZombieEthel · 14/06/2021 12:36

You have my complete sympathy. Do consider contacting the charity Changing Faces who support people with visible differences, including people with skin conditions such as acne. They can give emotional and psychological support. They are brilliant and I highly recommend them.

TheGumption · 14/06/2021 13:11

Sad this is horrendous. You need to see a dermatologist. Your needs a valid and you are no less deserving of an appointment than anyone else. You can't continue like this.

Hankunamatata · 14/06/2021 13:41

Friend was exactly the same. He said it was the pain that was the worse especially at night. He did roaccutane twice and then laser to smooth the skin.

tara66 · 14/06/2021 14:39

You don't seem to say anything about having sought any medical help - why not? 2 relatives were put on antibiotics by their doctor for acne and it worked well for both.

merrygoround88 · 14/06/2021 14:42

OP when you say nothing works, are you referring to having tried roaccutane ?

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