Accepting the HS Life
According to Dr. Elizabeth Kubler-Ross, there are Five Stages of Grief: denial, anger, bargaining, depression, and acceptance. Her observations of – and work with – terminally ill patients led her to develop this concept.
These same five stages can be applied to life with Hidradenitis Suppurativa (HS). Once HS is diagnosed, a new “normal” life must be constructed. Because life will never be the same once HS moves in.
Again, the severity of each person’s HS differs. But even the most mild cases bring about changes in physical, mental and emotional aspects of a person’s life.
Grieving over what was once a “normal” life is natural and a very human reaction. You may no longer be able to jump out of bed, shower, dress and commute to a job. You may have difficulty picking up or holding your children or hugging a loved one. Your mobility and social interaction may be limited.
HS brings with it numerous losses in everyday living.
It’s only natural that people with HS experience those same five stages of grieving.
Grieving over a life you no longer have is normal and natural. Things will never be the same. But that doesn’t mean that things won’t be good.
Working through the process of grieving will bring you some peace of mind.
Speaking from personal experience, when the surgeon told me there was no cure and HS would return, I refused to believe her. It was 2012 and little information about HS was available on the Internet at that time. For a couple of years, things were okay and I was convinced the surgeon didn’t know what she was talking about.
Seven years later, with severe Stage 3, I now realize and acknowledge the remainder of my life will be lived with HS. It has been a difficult journey to traverse, requiring adjustments of needs and expectations.
No one wants to believe they have an incurable disease, one with which few people are familiar. It’s a mind-bending concept that, in the twenty-first century, HS is so unheard of.
So, yes, your mindset may initially tell you, “no, I don’t have this.” But your body will tell you something else.
There is also the contradiction of the mind to believe that HS will be part of your life . . . for the rest of your life. Surely with the next surgery, it will be gone. Surely, with all the medications and antibiotics available, it will rid my body of this monster.
But the reality is that the medical profession doesn’t yet know enough about HS to properly “rid” the human body of this ailment. It is a reality difficult to face and more difficult to swallow.
This is the first step in the grieving process.
Anger at HS sprouts with each new flare. Each time you have to cancel going out with friends because of the pain or fatigue. Each time you attempt to do something you used to do with ease but now is a challenge. Anger at losing your job, not being able to pay your bills. Anger at medical professionals who don’t listen or appear apathetic. Anger with family and friends who doubt the validity of HS or who simply refuse to understand what you are enduring.
There will be a good deal of anger, especially in the beginning. Because the life you once had – and enjoyed – has been replaced with a life you’re not quite sure how to deal with.
Though it is little comfort, time and getting used to your “new reality” will help ease the anger.
Seek help if the anger becomes debilitating or consuming. Dealing with the anger is an important element in learning to live with this life with which you have been dealt. Constant anger generates stress and stress is counterproductive in the battle against HS.
Finding ways to deal with the anger becomes the challenge. Venting to friends and family, in an online support group, online or phone counseling can all help you with working through the process of anger.
It isn’t so much bargaining as it is the big “IF” word. IF I change my diet. IF I exercise more. IF . . .
That’s a small word to carry so much responsibility.
There are numerous things that you can try to alleviate the physical and emotional traumas of HS.
For some, a change in diet helps reduce the inflammation and pain of HS abscesses. Loose clothing helps reduce irritation to abscessed areas.
The truth is that no amount of bargaining or IF will remove what is now part of your daily life. Even if diet or other changes reduce the effects of HS, it will still be there.
Unfortunately, depression will rear its ugly head from time to time. And this can be the biggest battle of all.
Combating depression takes an act of will that, some days, you may feel you don’t have. And it’s all right to allow depression to take you down, as long as you don’t allow it to keep you down.
Occupy your mind. Take up a hobby. Take online classes. Talk with friends. Talk with a counselor.
As with the anger process, do what you must to work through this aspect of grieving over the life you once had.
Acceptance of life-altering events is not always easy. And HS is life-altering.
A diagnosis of HS does not mean that life is over. But it does mean that life as you know it will change.
The Serenity Prayer comes to mind: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
You have HS. You cannot change that.
But you can change your attitude and outlook about it.
You can use it to forge a new life. You cannot change your circumstances but you can change your perspective about your circumstances.
Lifestyle changes can be enriching as you experience the world in a different way from most people.
You learn to appreciate the good days more than you ever have before; something many people take for granted.
Take comfort in the fact that you are not alone in this battle. Take comfort from the friends and family who support you. Take comfort from a beloved pet. Wherever you find it, take comfort and appreciate it.
Your old life no longer exists. You still have a life, it is just one with which you are not familiar. Acclimation is necessary. It will take a little getting used to and only time, determination and patience will achieve that.