The Itsan forum throws up some interesting topics of conversation, but one particular thread a few days ago piqued my interest. One of the forum members likened the steroid withdrawal process to the five stages of grief that people undergo when experiencing a stressful or life-changing event.
The stages are:
1. Denial: When I used steroids for my eczema, I could see that my skin was getting worse and that the fine red rash all over my body looked very different to the eczema I had experienced as a child. I took stronger and stronger meds without thinking there could be a link to my worsening condition. Even when I did finally stop steroids, there was a strong element of doubt as to whether my new regime would be successful. I often questioned whether the rebound flare was just worsening eczema from stopping the steroids. Many people read about Red Skin Syndrome and refuse to believe that they have it, even though they may be using steroid creams every day and display all the classic signs.
2. Anger: Once I understood what was happening to my body, I was angry. I was angry at my doctor for repeating my prescriptions without question, I was angry at the big pharmaceutical companies profiting from steroid cream sales and I was angry at myself for continuing to blindly use steroids for so many years without question. I was also pretty angry at all the people with nice skin-it just didn't seem fair! Likewise many other get angry when they come off the steroids and wish to sue or take action against those responsible. This militant attitude can have its benefits though. I channelled my energy and anger into creating this blog to warn people about steroids and prevent others from suffering as I have done.
3.Bargaining: In my case, bargaining was trying to find ways to drastically shorten the healing period. I tried various supplements, cutting out foods and different types of creams and ointments. At the end of the day, the evidence shows that unfortunately, at the present time, there is no known way to shorten TSW. You just have to let it run its course. This doesn't stop people from trying various methods to heal quicker though. The Itsan forum is full of anecdotes from individuals who have tried all sorts of remedies, from dietary changes to more drastic sauna treatments and alternative therapies. None of these has produced miraculous healing in anyone yet though, and the people who have healed completely never used any of these methods.
4. Depression: This is a biggie. I have felt rock-bottom many times during this hell of withdrawal. Usually it is because I am undergoing a flare after a period of good skin. An unexpected flare turn good skin to mush and turns hope into despair. Many have found the process of TSW so traumatic that they fear potential post traumatic stress disorder once it is over. Panic attacks are common, and despondency can push one to the limit. I am so thankful for the Itsan forum, which is a great source of encouragement when I am laid low.
5. Acceptance: OK, lets get on with it. I know what lon-term use of topical steroids have done to my body. I know that getting angry about it won't help and I know that there are no "miracle cures" at the present time. Getting sad about it doesn't help. It makes it worse. So I accept I have TSW. I am going to do my best to live with it and try and live my life as normally as possible.
The thing is that I usually slip into the previous stages, particularly when I am having a tough time!
What stage are you at?
1 comment:
Hi Louise.
Good post . I think this is such an important thing to address .Being on day 142 i can say that i have been at every stage already.Its funny though because i cant say what stage im at at this moment . Maybe im in acceptance again but then it could turn so quick and i could be angry ,and so on and so on .
At the begining of me stopping i was both elated and scared , After a month i was angry but had accepted it . month 2 i was a bit depressed with the whole thing but then i had already accepted the situation so snapped out of it quickly . month 3 the denial crept in as as much as i would question if i was doing the right thing so had i realy accepted it ? mmm . month 4 and i was begining to see signs of recovery so the denial was gone .
For me the biggest thing through my recovery has always been the acceptance that i am ill but i have to become ill if i want to become healed .Its that what has kept me going .If for instance , there were no real time limits on peoples recovery ,as random as those recovery times are , i dont think i would have gone for it .I call it the "silver lining" aproach . I know theres a prize at the end .
hope you are ok ...Ty .
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