HS: A Stubborn Lifelong Partner
Oh HS, some days I thank you for shaping me into the woman I am, some days I kind of forget you exist. Today, I despise you! You currently have a stronghold over me. I thought you had disappeared but this was naive of me. Today, you have my body aching and my mobility limited. Today, you are my enemy.
HS can be very unpredictable. Last week I felt great! I was swimming with my friends, at the gym, and doing everything without it holding me back. This week it's like I am a completely different person. I have an underarm abscess that will not come to a head, a groin flare that is open but burning, and a nasty thigh flare that's deep under the skin but I can feel it with every stride that I take. Some would wonder how can someone who is so active be so unwell within a matter of days?! I can tell you how... Hidradenitis Suppurativa. A stubborn lifelong partner who always needs to shine.
How do I manage hidradenitis suppurativa?
Some days I can't. Some days I just need to rant and allow myself to be angry. It can be tough feeling so helpless! I have been on medication for my HS since December 2020 and as of this writing, it is July 2021. I was virtually flare-free for months. I think I tricked myself into believing I was "cured" but as many of you know, HS is an incurable disease.
HS is very stubborn, it always seems to find a way to take the limelight. It can be tough dealing with an "invisible" illness and I often worry I'm letting people down when I cancel plans or sometimes go radio silent. It's hard when you don't "look sick." I realize that sometimes I am too hard on myself and push myself to my limits but I am learning slowly to listen to my body and rest when I need to. This brings me to how HS can cause feelings of guilt.
Feelings of guilt
I feel guilty if I can do something one day, and I can't the next. I fear that friends or family will think I am choosing some people over others, but it is truly just the luck of the draw if I am feeling well enough to do something that day or week and it could all change in a matter of hours. I tend to downplay my symptoms a lot in fear of letting people down. Writing this article and posting on my Instagram is very therapeutic. It's like my diary. I can get all of these feelings out without being judged because the chances are if you are reading this you know what it's like to suffer from HS or know someone who does.
So my plea to you, if you have a loved one who is suffering from HS and you feel that they are being flaky or distant, chances are they are fighting a silent battle within themselves and they need your love, support, and kindness. I promise you we aren't bailing on you because we want to, it's because we have to. Some days the world feels heavy wih HS and for others, it's hard to imagine what it's like to have a flare.
Ignoring the what-ifs
The good days are a blessing. If anything HS makes you appreciate the good days/weeks even more. To walk without pain is a blessing, to simply lift my arms to wash my hair without pain is a blessing and to have a day where my HS doesn't cross my mind in some way is a rare miracle but a great one when it happens.
It's easy to grieve the life you thought you would have and it's easy to think about the what-ifs. This only causes more stress which let's be real isn't good for HS! I am learning to accept that my HS is in it for the long-haul and that wishing it wasn't there won't make it go away. I am grateful to find a community of people who get it. It makes it seem a little lighter. HS is our stubborn lifelong partner but some days, it isn't so bad.
What's in your self-care toolkit? (Choose all that apply)