What’s It Really Like To Have Eczema?
This is a letter I received from a husband of someone with Eczema and they are struggling with understanding Eczema and their relationship as a result of it. ( I edited out personal info except for the Doberman’s I.D. because I LOVE dobies!)
We met a couple years ago in Palm Springs when my family was on vacation and we happened to pass by your booth at the fair. You were kind enough to give my wife some pointers on eczema and what to do to avoid her seasonal flareups. We were the ones with the Doberman.
Was wondering if you could give me ideas on how I could help my wife deal with this better, or maybe how I can deal with this better? She said I don’t “get it and never will” and this kills me because I really thought I’ve been there for her and she knows I would do anything for her. But there seems to be a rift between us stemming from this eczema problem and she won’t talk to me about it anymore. I know she’s hurting and I’m thinking we need counseling and I don’t know where to begin and I remembered you and recently came across your business card and figured that was a sign.
My response to this loving husband and anyone else out there wondering…
Let’s go through this in stages.
STAGE-1: SELF-DOUBT – Anyone with eczema will begin this journey by questioning and abusing themselves. They will ask and begin a self-doubting roller-coaster ride of:
“Was this because of something I did? Something I ate? Something I am allergic to? How did I cause this? Is it because I’m not clean enough? Healthy enough? Eating junk food? My lifestyle of stress, working, etc.. Am I too weak? Is it because I’m a redhead, white, Asian, overweight, menopausal, student?”
This is a normal mental and never-ending checklist and is ok unless it becomes obsessive. For example, in the cleanliness issue, a secondary problem develops and that is compulsive cleaning or using antibacterial soaps or bleach because they feel they need to ultra sanitize themselves, their surrounding, their clothes to clean off the imaginary bacteria that must be causing this condition or avoid infections. This obviously will make the problem worse, both from an increased stress level as well as increasing toxic chemical exposures that could contribute to the problem.
My advice? Give him/ her space to explore this jagged terrain and be there to carry the backpack and all the weights, and the waterproof tent when it rains hard while you lose complete sense of direction in the wilderness and it feels like you’re going in circles. There are some that never find any rhyme or reason with this even after years, but that’s a small percentage. Eventually patterns develop and it’s all about how well you document the journey.
Most people have to work through a diet of elimination to consider what triggers could be suspect of the flareups. Remember, eczema is typically one part of a triad of conditions – ECZEMA – ALLERGIES – ASTHMA seem to come in 3’s especially with young children. So again, that’s normal to start by documenting the good, bad and ugly of what’s going on over time.
STAGE-2: RESENTMENT – This is where the, ” Why me? ” feelings set in. I don’t deserve this, I don’t have time for this, Aren’t I dealing with enough? Look at her, she eats junk – why doesn’t she have it? Now I have to change, eat differently, sacrifice fun activities with everyone? Oh just this once…and then fears of – will I or won’t I flare? Oh no…then there’s the guilt. If I had more self discipline, I wouldn’t be in this agony…and then self-hate sets in. OUCH! Looking in the mirror and seeing what I did to myself is even more painful than the worst eczema flareups because now we add a heaping scoop of guilt and self-blame. Hand me that chocolate and I’ll wash my shame down with some red wine! Again, vicious cycles slap you silly in this stage!
Feelings of deprivation begin to set in and it’s natural that anytime he/she is deprived there could be feelings of life passing them by. That hurts! It really does. Watching your kids go swimming in the chlorinated pool all summer starts chipping away at even the strongest person – so this is where a sensitive support partner can step up and be a hero. Find alternatives and physically be there during the deprivation.
Yes – this is exhausting. But somewhere between reality setting in and acceptance is you. Unconditional love and diving in head first to the next stage is where you will shine.
STAGE -3: EDUCATION – a whole new world opens up. Something about the universe opens its energy forces to welcome you down many roads. The latest medical theories along with the ancient therapies will be playing a tug of war in both your brains at 2:32am. Oh how the spirits of every know-it-all relative whether they are dead or alive they will be emailing and knocking your doors down, judging you and ridiculing your choice of methodology. Here’s a sure thing – you will choose the wrong one. It’s a Russian Roulette and the gun is loaded – so expect some emotional hemorrhaging and awkward Thanksgiving dinners because “they” believe you are backwards and not worthy to raise your own children or make medical decisions about your health.
Social outcasting and bullying is HUGE in and around this community. There are literally internet trollers casting nets out to the eczema folks that choose Topical Steroids vs. Natural Alternatives. Once you get caught in this net, you will get chastised from the other team. Meanwhile, you will come to a meeting of the minds with your doctor. Ahem…but that will be your 7th doctor after you’ve driven across 3 county lines to find this doctor from a real person that actually had a legitimately good experience with that human angel doctor.
STAGE-4: ACTIVISM – here is where we all settle down and then rumble back up under the umbrella of a worthy cause. This could be because now as a united couple or family, you all have discovered you are stronger together for this experience and that you feel you can help others. The beauty of this is that you now have tender successes that were so challenging, but worthwhile. It’s that moment of climbing on the roof and singing to the world, Eczema did NOT take this house down. You pound on your chest and echo to the world, WE live here and will not be spooked out by this ghost of eczema that we’ve accepted resides with us.
This redemption of chest-pounding might be with your child’s schoolteacher or on a large Facebook Eczema support group. Meanwhile, now that you’ve had a meaningful journey together, you can build on that wonderful, for better for worse, in sickness and in health test that you’ve passed and allow your relationship to take on a deeper sense of connection.
Your eczema partner is lucky to have someone caring enough to read this and seek sources that will further expand both your knowledge and your intimacy. Pound your chest! This is about YOU now! Did you know you were someone’s hero? Go celebrate yourself – you deserve some credit here. In the end, we all need to feel that our suffering did not go down in vain. How gloriously noble it is to be the sacrificial lamb for another…
My best to you and my prayer for our Eczema community, including the bullies,
Let the healing begin…