Things That People Going Through TSW Want You to Know
1. It's not just really bad eczema
While some of the symptoms mimic traditional eczema such as itchy rashes, the severity of these symptoms we experience are like a thousand times worse and often covering 100% of the body, and we are also hit with other symptoms common to drug withdrawals, such as insomnia, anxiety, tremors, inability to regulate body temperature... The list really goes on and on. Sometimes the withdrawal symptoms can be so severe people end up in the hospital. This condition is serious business and we just want it to be treated as such.
2. It affects our lives in every way
We are in physical pain, we are emotionally exhausted, we are psychologically traumatised, we are socially impaired and we are economically depleted.
3. Healing is not linear...
Unfortunately, healing for us doesn't involve slowly getting better and better until finally we are well again. The process involves feeling worse, then a little better, then worse again, than even worse, then little better, and on and on it goes until finally we are healed. It sucks and this roller coaster can be completely heartbreaking at times.
4. ...And it takes a bloody long time
For the majority of people, the healing time seems to fall somewhere between 1 and 3 years, and for some it can take even longer than this. So please don't ask us things like "aren't you better yet?"
We probably won't be and it will just makes us sad.
5. It is not our fault that we have this condition
Even though we have made the decision to stop using topical steroids, that does not make it our fault that we are sick. Unfortunately the blame for our condition lies with the doctors that prescribed us topical steroids over and over again for years without considering the damage these drugs were doing to us.
6. The majority of us cannot find a supportive doctor to help us
For some reason, doctors are burying their heads in the sand about this condition and refuse to believe that topical steroids have caused the damage to our skin that we are displaying. They do this in spite of the fact that this condition has been known about for more than ten years, there are several journal articles published in decent medical journals and also it says on the lists of side effects never to use for more than two weeks (which every doctor I have ever had has told me to ignore and to use for as long as I needed).
7. Doing pretty much anything for us is an effort
We are constantly experiencing some level of pain and discomfort (speaking only for myself I am itchy and sore 100% of the time) and often we are extremely sleep deprived so most of our energy goes into just trying to cope. As a result of this things that most people do without having to think about (washing your hair, doing dishes, going to the supermarket etc.) takes a hell of a lot of energy for us to do, and it often comes at the sacrifice of being able to do anything else for the rest of the day (Google the 'Spoon Theory').
8. Sadly, that includes things that we may really want to do
Such as seeing family and friends, exercising, leaving the house, even anything that we may do at home to keep ourselves distracted. For me, I haven't been able to leave the house more than a handful of times in the past six months, my mum and sister always have to visit me at home, and even small bouts of socialising can cause me to badly flare pretty much instantly. On my really bad days I can't even knit to keep myself distracted.
9. Sometimes we may look a bit better than the last time you saw us, that doesn't mean we are feeling better.
In fact, often we feel worse. Our skin can look alright but still feel sore and like it is burning. TSW is weird that way.
10. We need lots and lots (and lots) of support from our friends and family
Going through this is hard. Really hard. And lonely. Many of us have to withdraw from life for a long time. Many (myself included) have had to stop working and seeing friends. Often we can't even look after ourselves and have to rely on other people to do things for us (standing ovation to all the TSW caregivers out there including my wonderful boyfriend).
11. We appreciate that you want to help, but we really want everyone to stop giving us unsolicited advice.
We aren't stupid. We've spent more hours than we can count doing research and already tried a million different ways to help our skin over a number of years. Don't tell us we need to change our washing powder or try a particular cream that is labelled hypersensitive or try some magic strategy that your neighbour used on her baby to help her rash. There is no secret solution to help us that we just haven't found yet. No cream, oil, supplement or diet change is going to make us better, the only thing that heals us is time.
So I'm saying right now, we don't need you to fix us, we just want support. So just ask how we are and listen, it means more to us than anything else.
12. We frequently worry and doubt ourselves...
We wonder if we will ever heal, how long it's going to take, if we are making the right decisions in how we look after ourselves, if the worst of our withdrawal is behind us or still to come, if our bodies are permanently damaged, what people are thinking when they look at us, if we will ever get our lives back...
13. ... But we know we are doing the right thing
Speaking only for myself, I can say that in spite of the terrible pain and suffering I have experienced for the last six months, I have not regretted my decision to stop using topical steroids and go through withdrawal for even a second.
While on topical steroids, the life I was living was not life as it should be. I was completely dependent on a dangerous medication, and even though I was using it every day, my skin was still so bad that it was stopping me from doing many things. Going to work or uni or out socialising was very challenging because of my levels of pain and discomfort, and in the months before I stopped using topical steroids, my health declined to the point where doing these things was nearly impossible.
I know that even though this process is awful, I am doing it to get my life back, because I deserve to have a normal life.
AND LASTLY AND MOST IMPORTANT...
14. PLEASE don't tell us to stop scratching!
It's counterproductive and we HATE it! Scratching is a response the body has to feeing itchy. It is a reflex the same way that breathing is a reflex. So you telling us not to scratch is like us telling you not to breathe. I cannot stress this enough. Plus the level of itching we experience can be insane.
The only thing that saying this achieves is to make us feel horrible and guilty for not being able to stop and mad at you for not understanding that it's not under our control.
If you absolutely MUST say something, tell them that it's ok to scratch, to be gentle and that everything will be ok.