50 Things You Might Need to Hear If You Live with Hidradenitis Suppurativa

So here in New York it’s currently freezing and beautiful and blizzarding out (it’s a verb, I swear). I really love watching the snow but I currently can’t go stand by the window and watch because of an obscenely rude groin flare. It hurts to walk, sit, stand, and really any movement with my right leg. Instead of just laying here, I thought I’d pull out the old laptop and make a list of the things I need to keep telling myself about living with Hidradenitis. I thought other HS Warriors might need to hear some of this too:

Things we need to hear while living with HS

1. Hidradenitis is not your fault.
2. There’s no cure for Hidradenitis, but there are methods to help you manage it.
3. If the pain gets too bad, do not hold off going to a doctor because it can make everything way worse.
4. Seriously, doctors are friends, not food (...aka bad people).
5. A past doctor may have been a quack, but there is a capable one out there somewhere and don’t give up trying to find them!
6. It’s okay to not be okay.
7. Hidradenitis is not your fault.
8. If you want to lay in bed all day, you can.
9. If you want to push through the pain, you can.
10. Your health (mental and physical) come first and shame on anyone that makes you feel bad.
11. Always get the rest and care your body needs and deserves.
12. The people that mind don’t matter and the people that matter don’t mind.
13. You don’t need or deserve toxic people in your life.
14. You are so strong for living with a chronic illness that can cause so much pain and suffering.
15. Hidradenitis is not your fault.
16. Please try not to be sad, try and find a distraction instead!
17. It’s okay that you wanted to eat what everyone else was eating.
18. You are human and deserve the same as everyone else.
19. You are not alone.
20. Remember to breathe and take one day at a time.
21. This flare will get better eventually.
22. Hidradenitis is not your fault.
23. You are stronger than you realize.
24. You don’t have to let your Hidradenitis define you.
25. Ask for help when you need it and don’t be stubborn.
26. If you’re flaring, you might not be able to do certain things and that’s okay.
27. Don’t push yourself more than you ought to.
28. It’s okay to fake a smile.
29. It’s okay to ignore a text message.
30. It’s okay to not want to have a conversation with someone (*cough* or anyone).
31. It’s okay to want to be alone.
32. It’s okay to not want to be social.
33. It’s okay to call out of work.
34. It’s understandable if you feel angry, sad, and scared.
35. Hidradenitis is not your fault.
36. It’s okay to feel scared when starting a new medicine or treatment.
37. It’s okay to cancel plans at the last minute.
38. It’s okay if you feel like crying.
39. Your feelings are valid.
40. It’s okay to show your scars and flares and spots.
41. Your scars are your story and the world should know it.
42. The only way to make HS known is to talk about it so don’t be scared to talk about it.
43. Hidradenitis is not your fault.
44. Don’t be ashamed of a disease you can’t control.
45. Don’t be ashamed of a disease that isn’t caused because you’re unhygienic, or because you don’t change your razorblades enough, or because you’re overweight, or because you ate a chocolate chip cookie.
46. This is a disease that is in your body because you were born with it and it’s nothing you’ve done wrong.
47. For the love of god, it’s not an STD or ingrown hair.
48. Please, please remember, you are not alone.
49. Even if you don’t feel like it, you are so strong and you deserve so much love and positivity in your life.
50. Hidradenitis is not your fault!!!

Listening To:

• How Bizarre by OMC
• Torn on the Platform by Jack Peñate
• Take Her Back by The Pigeon Detectives
• She’s So Lovely by Scouting for Girls
• This Modern Love by Bloc Party