30 Things You Might Need to Hear If You Know Someone With Hidradenitis Suppurativa (Or If You’ve Never Heard of Hidradenitis Suppurativa)

I love lists. I love pro and con lists, to-do lists, grocery shopping lists, “5 Practical Gifts for Chess Players” lists. You name a list, and I’d probably be fascinated to read it. Perhaps it’s the easy to read numbered-format or the short sentences, but I just think they’re damn fun. So, here’s a list for people that might know someone living with Hidradenitis Suppurativa, or if you've never even heard of HS. Some of these things might be hard for someone to come out and say, so I hope it can help inform anyone that might need to be made aware of them.

A list those of you who know someone with HS

1. Hidradenitis is not contagious.
2. Hidradenitis is not sexually transmitted.
3. Hidradenitis is not caused because of unchanged razor blades or poor hygiene.
4. It is not an ingrown hair.
5. Obese, overweight, normal weight, and underweight individuals can all have Hidradenitis.
6. The flares are extremely painful and uncomfortable (both physically and mentally).
7. Sometimes it hurts to move our entire bodies.
8. We are not lazy.
9. Sometimes we get really tired and exhausted.
10. Sometimes we get really cranky and frustrated.
11. Sometimes we feel like curling up into a ball and crying.
12. All of these feelings can happen over a span of 47 seconds, so look out!
13. Everybody is different so flares can happen all over the body and there’s no one-rule-fits-all of where an outbreak can happen.
14. The flares can literally sprout out of nowhere (seriously, nowhere like Randy-Orton-RKOing-out-of-nowhere nowhere).
15. We might go to bed fine and then can barely walk or move without pain when we wake up.
16. We don’t mean to cancel plans on the last minute.
17. When we do go out, we don’t intend to have to leave somewhere early because we suddenly feel unwell or exhausted.
18. We also might not be able to partake in some activities because of a current flare (bowling, driving range, hiking, walking, or sitting for long periods).
19. We might be uncomfortable showing the parts of our bodies with flares or scars from past flares.
20. Sometimes our flares can be caused by what we eat so our diets might be sort of wacky and restrictive.
21. Please don’t rudely point out if we’re eating our triggers (sometimes it’s nice to feel normal and have what everyone else is).
22. Having tattoos and piercings doesn’t necessarily mean we’re okay with getting blood work, injections, or lancing/drainings/packings so don’t even try that with us, Bub.
23. Stress, depression, and anxiety can also trigger flares.
24. Please don’t tell us to mediate.
25. Please don’t tell us to do yoga. *remember, we can barely move sometimes!
26. Please do not tell us to try any scummy multi-level-marketing products.
27. Please don’t start getting all religious on us. (If you’re religious, that’s totally fine, but it doesn’t really help at all hearing that God has a plan for us or that he will cure us when the time is right.)
28. Please don’t invalidate our feelings and say we’re too young to feel the way we do.
29. Please don’t tell us we’re too young to take as much medicine as we do.
30. Please know that we appreciate your help and everything you do for us, even if we get cranky and snap during a flare.

Listening To:

• Step to Me by Spice Girls
• Astro Zombies by My Chemical Romance
• Dominos by The Big Pink
• LDN by Lily Allen
• Big Fan by Stiff Dylans