At first I was upset that I poured my heart out in an eczema support group and received no response whatsoever. A lady in this group had a son experience such bad eczema that she turned to the group as a last resort for support. Dozens of comments said "I'm sorry" and offered their medicines, creams, diets and holistic methods, but I was the only one to comment on the most important factor in healing myself: long-term emotional and spiritual support of the person in pain. I was wondering why someone would ask for help and then give no feedback that they accepted or denied the comments. I felt like my response, which mattered so much to me, was shunned, because it wasn't good enough.
I was wrong in asking myself why she didn't respond. How dare I ask such a question without considering what she's going through? How must she be feeling getting all these responses that her son may or may not have already tried? What is she going through being a mother with a child in pain? She posted about her son, which caused me to respond, but that doesn't mean I should have expected anything in return.
In the heat of the moment, I could have written an article called, "I Wrote This Long Emotionally Invested Comment About Chronic Pain That Was Ignored," but that would have accomplished nothing. Instead, I'm writing an article celebrating the strong voices in a community of struggles. You are amazing for reaching out with your concerns and using your voice to share awareness.
I want people outside of these support groups to know that we're not against each other. We should celebrate our accomplishments together, and offer any assistance possible when others need it. So response or no response, if you feel affected by my comment in anyway, that's all that matters to me.
On January 11, 2018, Kaehla Maurer wrote:
I hope you find something helpful in these comments. Although I'm not giving a cure, as someone who has battled extreme eczema and anxiety my whole life I know this is just as important. When his skin is good continue to practice preventative measures, such herbal remedies, diet, keep him active, UV, salt rooms, allergy testing, etc even when you think things are no longer necessary. Keep your house clean and organized, especially the air. Learn to live a healthy lifestyle so he can learn too. I've found living healthy makes it much more manageable.
I hope you find something helpful in these comments. Although I'm not giving a cure, as someone who has battled extreme eczema and anxiety my whole life I know this is just as important. When his skin is good continue to practice preventative measures, such herbal remedies, diet, keep him active, UV, salt rooms, allergy testing, etc even when you think things are no longer necessary. Keep your house clean and organized, especially the air. Learn to live a healthy lifestyle so he can learn too. I've found living healthy makes it much more manageable.
But especially when it's bad, continue to give him absolute love and support to make it as easy to cope with as possible. Even if you're frustrated that he can't help but scratch and have flare ups, don't yell or show disgust. That will eventually break him.
Reassure him that the pain is only temporary (since it comes and goes) and have him focus on the things that relieve his stress and work his mind and body in a healthy way (for me that is performing arts and traveling). Really listen to him and hone in on his passions and strong suits even as early on as being a baby. Learn his triggers as early as possible to reverse the symptoms faster. What's going on around him that might cause him discomfort, and how can he turn them into something positive? Help him to be stronger in aspects of his life that will overshadow his condition.
I would also try different kinds of health professionals, whether doctor or allied health professional. There are thousands of accredited people out there but you have to find one that you TRUST and one who LISTENS. Derm problems are way more than skin deep and even if your dermatologist may be fantastic there is only so much they can do.
I'm may not give advice for immediate relief but this will definitely pay off when he's growing up. I'm just speaking from experience.
Growing up with chronic pain will never be easy, but it will make anyone a stronger person.
Definitely start with allergy testing. I've grown up in the swamps of Florida and only in college did I figure out I'm allergic to mold. Now I'm able to prepare when the count is higher in the air and if a building does not tend to moisture problems or clean their ventilation I know to leave because I start sneezing and flaring immediately.
The bottom line is this: Growing up with chronic illness makes the person AND their family and friends stronger. Keep finding those strengths to thrive.
