Feelings about HIDRADENITIS SUPPURATIVA

HIDRADENITIS SUPPURATIVA is not just a disease of the skin, it is a disease of the spirit.  For a person with HIDRADENITIS SUPPURATIVA the emotional ramifications are three fold.  First and foremost is self concept.  For a person with HS, the body becomes something that is disconnected, shameful, painful, and hated.  The HIDRADENITIS SUPPURATIVA sufferer feels like their own body has betrayed them and become the enemy.  Secondly, the HIDRADENITIS SUPPURATIVA sufferer’s personal relationships with family, mates, and friends is severely effected.  Routine housework, social activities, and career become increasingly difficult to perform without excruciating pain.  We live in mortal fear that an open lesion might drain through the dressing and stain our clothes, or worse yet, someone might ‘smell’ the drainage. Multiple daily baths and strenuous hygiene does nothing to curb our fears or boost our self esteem. Intimate relationships become a nightmare.  Because of the sexualized regions that are affected by HIDRADENITIS SUPPURATIVA: dating, marriage, and physical intimacy become things to be feared and avoided.  How can a person who hates their own body share that body with another?  The shame and pain are too great! We ask ourselves, "What will they think?  How will I live with the look of disgust in my loved one’s eyes?  Who would ever want a scared, broken body covered in open lesions in the exact places that are supposed to be sensual and erotic?" Finally, the most noticeable and likely result of these emotional issues is depression.  Dealing with this disease and the sad lack of viable treatments IS depressing!  Physically, our bodies are stressed, in pain, and continuously fighting off infection.  Emotionally we are stressed, in pain, and continuously fighting off depression.  It becomes very easy to isolate ourselves, hide the lesions and the pain, and simply retreat into a world of lonely agony.