My Life with Ehlers-Danlos: Maintaining Relationships When the Struggle is Real
January 21, 2016
By Tiffany Early
It’s been a rough few weeks, and I feel like my Global Genes friends will understand exactly what I’m talking about. I’m in a place as an EDS patient where everything hurts more than normal (and up until a few weeks ago, I wouldn’t have believed that was possible.); I’m struggling with simple tasks like sitting up in bed or rolling over at night.
The past few weeks in summary?
There will be many more good days (and more than likely many more bad days) as I continue this Ehlers-Danlos journey. I know at this point that if I just ride out the storm everything will eventually calm down.
The problem is, however, that riding out a storm involves a lot of time napping on the couch and very little social interaction. My husband is married to a woman with the personality of a potato right now. My visits with family are scarce, and my friendships exist only in the world of social media at the moment. When I first became disabled by my symptoms, one of my biggest struggles was maintaining relationships while juggling illness. It’s so easy to surrender to the hot mess of illness and give up on being a wife, daughter, friend, etc. I’ve developed a few rules for myself that help me survive flares while keeping relationships intact. Please know, before you even read these that I am FAR from an expert at maintaining healthy relationships while dealing with illness. My first instinct when EDS has me stuck on the struggle bus is to hide. I’ve learned, however, that my symptoms will come and go, but they’re easier to handle when I continue to reach out for the support I need.
Communicate. I have the tendency to believe that everyone should just intuitively know when I am feeling rough. I feel like the pain/ nausea/ etc. is screaming loudly enough for everyone to notice. The truth is- most people have no clue. To the casual observer, I just look like my hygiene practices could use refining. (No judgement, right? I can’t be the only person who struggles to find the energy to wash and dry her hair when feeling awful.) Those closest to me can recognize the signs (my husband and mom), but for the most part no one knows what is going on unless I tell them. So, to what extent it is necessary, I let my friends and family know I’m not feeling well. Of course, I don’t call them individually (or do one of those awful group texts) to say, “I’m sick,” but I let them know that I’m not sure if I’ll be able to make it to events. I explain that I’m not feeling up to long phone conversations. I ask if we can wait a few weeks before we have a lunch date. If I let people know up front that I’m not feeling well, it cuts down on my guilt for not living up to their expectations, and it tempers others’ expectations of me as well.
Keep my social media and text game strong. I’m sure this doesn’t work for everyone, but for me I like communication that I can do on my own time table- especially when I feel bad. Even if I’m not feeling up to meeting a friend for lunch or riding a couple hours for a lengthy visit, I can send a text or message via social media. No, it isn’t as personal, but it lets others know that I still care about them even when I’m MIA.
Take a risk. My husband has watched me sit around like a puddle for weeks now. He’s baked cookies and pizza for me. He’s binge watched Gilmore Girls. He’s even withheld comment when I wore the same sweat pants for days. He’s a pretty good guy, really. So, sometimes it’s worth it to take a risk. I’m not totally insane. I’m not going to take off to a trampoline park with him any time soon (Yes, if I were to ever have a symptom fee day, that’s where I would choose to spend it. I know, I’m strange.). However, even if I’m low on energy and high on pain, I will try to do what I can within reason. Last week, I had a doctor’s appointment in Nashville. My husband, Joe, wanted to go down a night early, so we could go downtown and listen to music. Did I have enough energy for that? No. Was it worth it to try? Heck, yeah! What happened? We had a great time, and I fell asleep sitting up at the table. We called it an early night. No harm; no foul. It was worth the risk, because my husband knows I’m still trying. He proves himself daily when he’s helping me sit up in bed or opening my water bottles (or agreeing to watch Hart of Dixie for hours on end). He’s worth the risk.
Ultimately, my life isn’t like that of a typical 31 year old, and that’s okay. Occasionally, illness takes over, and I have to take a hiatus from what little normalcy I’ve maintained. I’m learning to live my life in spite of all that, and I’m grateful that I have family and friends who are willing to put up with me in the process.
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.
Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.
Facebook– Facebook Support Group Instagram-| @crazychronictiff
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