For 25 years, doctors prescribed steroids to treat my eczema, but my skin continued to worsen. I eventually stopped using topical steroids and suffered severe withdrawal symptoms. I had an insatiable itch, red burning skin, uncontrollable shedding, nerve damage and difficulty regulating my temperature. It impacts my sleep and can be absolutely debilitating, having to bath every morning for just the slightest relief before being covered in bandages. But I also felt acutely embarrassed as to my appearance. I am now 3 ½ years without steroids. But it is always there – never a day when I am not affected in some way. I must avoid many foods which has caused immense anxiety and often have flare ups.
During my pregnancy, I had been steroid free for six months and was incredibly anxious about taking any drugs at all, and so had a medication free birth. It was terrifying experience as I gave birth during Covid, and my partner was only able to be with me in the hospital after being 4cm dilated. Due to my skin I didn’t know if I’d be able to breast feed let alone hold my baby.
My son also has severe eczema and at seventeen months old he was hospitalised for a week. He was covered in bandages and the doctors wanted him to have steroids, but I wouldn’t let it happen. It was incredibly difficult standing up to the medical team and family at times! But I just didn’t want him to go through what I had gone through, nor would I be able to touch him if he had steroids on him. The two of us were in a great deal of pain and at times, I felt suicidal. I was a complete mess, both physically and mentally.
In March, a friend recommended Home-Start and I started with telephone support and then attended their Bognor Family Group. Jo, the Home-Start Organiser is absolutely amazing, and all the staff and volunteers are such a comfort. They help me in any way they can. New to the area as we’d moved from London to Bognor last summer, I made friends and felt connected. Even when my skin flared up, embarrassed at my appearance, I felt safe to come along to Group. Albie also loved coming.
Since the summer and transitioning to a different medication, my skin is much better as is Albies having found out allergies and avoiding them but there’s always the risk and anxiety of flares. The staff always ensure Albie feels included and safe with his allergies. He loves playing with the other kids and it is a special time for both of us. The Group is free, I can’t afford for him to go to a nursery, so we are both devastated the Group is closing. Home-Start has given us other options for support, but getting out of the house really helps us both. We are both really going to miss the staff, volunteers and other families who use this safe space. Home-Start really has helped me when I felt I had no one else.