After you've been diagnosed with Hidradenitis Suppurativa you will experience a number emotional ups and downs in addition to the physical aspect. It is important that you have a support system and coping mechanisms, which could include friends, family, counselor, local face-to-face support groups, online support groups, and emotional support animal to name a few. You cannot do this alone; do not feel bad or guilty about leaning on friends and family, they are a large part of your support system. Most likely they’ll be happy to help, they just need some guidance on what you need and how to help.
Talk About Your HS
Sometimes simply sharing your journey lifts a huge burden off your shoulders. It helps when you talk in ways people understand so they can support you. Since HS isn’t visible in most cases, it can be difficult to for others to understand that you’re dealing with a chronic illness. Try to educate your friends and family the best that you can; send them websites or printed material, or if you're a part of a support group, invite them to join. Communicating with them also helps your support system understand why we often have to make excuses why we break plans, why we aren’t able to do things, why we get tired, sad, or even why we are walking funny.
Affect on Friends and Family
Having a chronic illness doesn’t just affect you, it also affects your friends and family members. Learning how to talk to your loved ones about your illness can be very beneficial. The more they know about your condition, the better they will be able to support you and understand what is going on with you. It is usually overwhelming not only to you, but to your support group as well. Understand that they are also dealing with an array of emotions while supporting you; be a resource for them and answer any questions they have the best you can.
Involve Your Support System in your Healthcare
If your friends and family are showing a special interest in your situation and well-being, consider taking them along to some of your health care visits. Share your medical records so they can learn more about your condition and ask questions about how to best support you. This is also good for you as well as sometimes it's just nice to have someone there with you.
When you're feeling physically challenged or emotionally exhausted, reach out to someone; it is difficult to not to let pride get in the way. Tell your support system what they can do to make things easier for you. Ask for help with things like housework, watching your children, or maybe you just need somebody to talk to. If you are physically able, ask a friend or and family to attend a yoga class, meet for a cup of coffee or join you for your favorite hobby.
Stay Out Of Your Head
Keep your mind occupied. Try doing things such as: Adult coloring books, crossword puzzles, crocheting, reading, arts and crafts, or watch animal videos. You can also find something you're passionate about that makes you feel good so you have an escape. Practice positive exercises and thoughts daily.
There are a lot of good meditation apps and tools on YouTube. Meditation can help a great deal with pain, depression, anxiety, and stress.
Animals can be your biggest support and therapy. Emotional support animals are still regarded as pets in most situations which means they don’t have the same legal protections as service animals in public and private spaces. These animals are afforded a few of the same provisions, however, a person with an emotional support animal is still qualified for no-pet housing and may fly with the animal without paying an extra fee. If you live in an apartment that does not accept animals, you may be able to get this waived.
If you think you would benefit from an emotional support animal please read our article here.
Suicide Prevention Hotlines Worldwide here.
Mental Health resources can be found here.
Content in this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking treatment because of something you have read on this website.
Written by Denise Panter-Fixsen
Edited by Brindley Kons