A guide for family and friends
If you're here because you have a family member or friend who has eczema or who is attempting topical steroid withdrawal, then they are damn lucky to have you in their lives. Proactively seeking information and advice so you can help support them through this process means you have a big heart. We need more people like you in the world because there just aren't enough!
I've compiled the below list of things which I found through my own experience was of importance. Some of these things I discovered through receiving them, some because I wasn't. But obviously these are just my own opinions, mkay!
I've compiled the below list of things which I found through my own experience was of importance. Some of these things I discovered through receiving them, some because I wasn't. But obviously these are just my own opinions, mkay!
- 'Don't scratch'.. and other things you shouldn't say. As much as your first reaction is provoking you, avoid telling the person to stop scratching. This only makes them feel either embarrassed because it seems like it's irritating you, or like they are 'giving in' or failing by scratching which will play on their already fragile emotions. It's obvious that scratching does further damage to the skin, but if the person is already trying methods to heal and fix their eczema, then scratching is possibly the only other thing providing relief. Sometimes the stinging and weeping after a good scratch is the lesser evil to the itch. I understand that when you tell them not to scratch it's because you don't want them to hurt themselves, because you care. So for a different approach (may not work for everyone), you know what made me feel a million times better when I was hella itchy? Human touch. Or as I liked to call it, Mr Tickles! I know right, how old am I!? While the nerve endings of the sufferer are in extremes, having another persons hand and fingertips gently stroke or rub the itchy areas can be very soothing. I would even gently rub my own fingers over itchy areas and it seemed to melt away (at least partially) the pricklyness of the itch. Never underestimate human touch. Even if it doesn't take away the itch, just having that physical connection can be cathartic plus its more constructive to offer an alternative to just telling them to stop.
- Be kind with your words. This is more for the people who live with the TSA. Know that you cannot cure them, but what you can do is be a person they feel comfortable around. Saying supportive things like 'I know you are suffering at the moment, but this will eventually pass and you have come so far. You are doing so well. Just remember this isn't forever.' They probably need constant encouragement so they don't fall off the wagon. Also, if the person is feeling self conscious remind them this is only temporary and that when they're better, they will look even better than before. Also, tell them they are still beautiful, even if they reject the compliment. Just hearing this can still build the persons self esteem, even just a little bit is better than what they are feeling. Or its really nice to have someone simply offer to help you out when you are feel crappy, even if you just ask them if they want a cup of tea. It's really the little things that make the difference so be gentle.
- Patience my friends. Loads of it! If you don't have this important tool in your tool kit, then you need to get some. Have you ever noticed how a sick animal will act so vial, lashing out at other animals when they come near, not eating, snarling. We are animals too (duh!) and when under such physical and emotional stress we will retreat to our little dens, sometimes striking out at the ones we love. Don't take it personally. Don't bite back. Just remind yourselves that their bodies, organs, chemistry and emotions are under a metric tonne of change and stress. Its the sickness talking and this is just an unfortunate byproduct of their withdrawal. Then once they are all better, you will be the people they first come to when they emerge from their caves wagging their wee little tales :)
- They need you. And the main thing they require from you is your love and support. By this I mean empathy, tell them you are thinking of them and ask them how their skin is going and how they are holding up. Call, text or email them. Stay in touch with them so they know you are a support network for them and if they need you, it's easy to reach out. From my experience, the worst thing is when people leave you alone. Perhaps people assume you don't want to be bothered or that you've got enough on your plate and maybe for some people, that's what they want. Just don't alienate them, especially if they are staying indoors for a long time. It doesn't take much to keep in touch with someone. It also doesn't take long for a person to feel alone, so make sure they never have to.
- Treat them like a human being. When you are around them, you don't have to feel like the only thing you are allowed to talk about is their issue. I get a real sense from people sometimes that they feel awkward to talk to me like they're not sure if talking about their own lives is insensitive. But I'm telling you, this person wants to feel normal and if the only thing on the discussion table is the eczema, then that keeps them locked in that same cage. If you guys normally talk gossip, then gossip. If you would normally talk politics, great, do that. Of course talk to them about what they are going through, but make sure you still act as though they are the same person underneath.. because they are!
- Never, and I repeat, never tell the person that having eczema is something they just have to live with or, its just part of who/what they are. This sort of defeatist attitude is negative and pessimistic and will only serve to make the person feel like their life is cursed. You may think its just being realistic, but it is actually uneducated and insensitive. Eczema is a 'symptom' of something else going on in your body. Its just a matter of finding out what that is. So it's easy for someone healthy to sit on their high horse touting their assumptions on what other people should accept for their bodies, but good health is owed to everyone and if there is a chance at gaining this, then you should not be there throwing a monkey wrench in their minds. Don't damage the persons hopes or motivation.
- Do your research. If you can learn peoples experiences, read their blogs etc to find out what others are going through, then you will not only have a broader understanding (=more empathy) but you can also find loads of advice and other methods which may help them heal faster. For example, I only started researching properly about 3 months into going off cortisone. This was when I found the name for what I was going through. TMW. This lead to many more helpful pages which took me to 'moisturiser withdrawal' and further dietary pages. All of this information helped me gain a butt load of confidence and is now helping me heal faster. Ok, I found the information on my own, but the point is that it took me 3 months to decide to look for it. So if you can do your research where they haven't, it may be a great game changer for them. And because I'm so nice, you'll find my best game changers on the resources page. Ahh good vibes :)