How to support someone going through TSW

There are different ways someone going through TSW needs support. Emotional support and encouragement is crucial, because constantly being itchy is so draining and they generally don’t feel good. Then there are the practicals of supporting them such as applying creams, tending to wounds, and always itching and scratching for them which is important to stay comfortable and prevent infection. While going through TSW people also experience extra food sensitivities, diet changes, lifestyle changes and mood changes to adapt to what they are going through.

During the heat of a flare it is easy for our son to become frustrated and upset because he is so uncomfortable and doesn’t want to be itchy. The way we have addressed this with him is to remind him that it will pass. The flares seem to come on almost like the surges of a contraction during labor. I can tell when one is coming because he starts to get red and aggravated and slowly starts itching. Then the peak of the flare is usually full body intense, deep itching. Then the surge begins to die down and he relaxes and it fades. There are times the flares are more intense, full body, and last longer, and other times they are mild, shorter and in only one place of his body. We usually ask him what he needs and offer zinc cream or castor oil (the only two creams he will willingly let us put on his skin), ice pack (soothes the burn), to lay down and rub his back (calms him down), or we get creative with some sort of distraction. The more he can relax, the smoother the flare is and faster it goes away.

Some things we have felt effective to say to him in the middle of a flare is reminding him that his body is working so hard to heal him. His skin hurts now, but it is working on becoming stronger. It helped shift his mindset of being mad at his itchiness- he would say “bad itchies bad!!” to “my body is working so hard right now!”.

We remind him it will not last and to be brave and strong during the times that he is itchy. While we so wish we could just take it away, we know we cant and my hope is that this incredible suffering he is enduring will make him more resilient.

We pray during flares. Sometimes he requests certain prayers and other times it is more routine. Its a great time for us to slow down, sit with him, and help him itch his skin and pray over him.

We find that the more relaxed and calm we are able to stay the better the outcome, which seems obvious but my goodness it is so hard to maintain my composure when he is itching himself open (especially when it happens in the car!). It has been such a practice in patience and a completely different kind of love. I often think of the way our mother Mary was asked to sit at the foot of the cross and be with Jesus during the worst of his suffering. There was nothing she could do, she couldn’t take it away from him or stop it from happening. That is what I am being asked to do during his flares. In those moments I try to remain with him and endure the suffering with him.

While TSW and eczema definitely come with many physical demands, sometimes I find the emotional demands even more pressing. He looks to my husband and I to be strong in the moments he is suffering and it has stretched us and helped us grow and become stronger so that we can be there for him.