The High Price of Understanding


Remember when I was thankful my brother didn’t get my illnesses?

He’s beginning to get it.

After Justin graduated college in May, he moved back in with my parents until he could tie up loose ends and leave the area. My parents live on a lake, so Justin was enjoying a great summer.

Until he fell off the jet-ski and tore his MCL and PCL in his knee.

Justin then found himself laid up, on crutches, and going to doctors and tests to find out what exactly happened to his knee and what action(s) to take. His passion for working out was put on hold, as was his job.

A couple weeks after his injury, Justin came to visit me. Soon our conversation turned to matters of health. The way he talked about not being able to do things and the uncertainty that lay ahead with his knee told me he was beginning to understand what it was like to be a Spoonie. His focus then turned from himself to those ill in general—how hard it must be to live day after day in pain, unable to do things that “normal” people do, or even things that they used to do. He said he could see why Spoonies could battle depression or even consider suicide.

Justin gets it now. I won’t lie; it makes it easier for me now that he has more understanding and empathy. However, it came at too high of a price. I never wanted my brother to have an injury or an illness so that he could understand me more. It’s not worth it. We can’t change what has happened to us, but Justin and I will make the best of it and become better siblings and better friends.


Article written by staff writer, Sonja K. Peterson

Sonja is a cat mom with endometriosis and fibromyalgia. She also had a hysterectomy for adenomyosis. She blogs about her experiences at The Mud and the Lotus Follow her on Twitter @sonjathegreat.

  • Rebecca Chandler Bilot

    I have a rare genetic disorder called Fabry Disease because of this I have had neuropathy for as long as I can remember. It became daily 8 years ago, even with meds. I also suffer from 3 different chronic headache disorders. This has caused me to have a headache everyday 24/7 for the last 6 months. Two of them are the most painful and complicated headaches known. I also have interstitial cystitis that also causes pelvic floor dysfunction. When my dad was alive he was further in to the progressive genetic disorder’s symptoms and therefore understood that pain and had other pains like I do now. It was great having that support and understanding. My sister has the same disorder but her symptoms have not manifested with the pain like mine so far and she has no other ailments. I miss having my dad who understood what I go through and how I feel, but I do not wish this on my sister who is my first baby and my friend and my sister. I pray that this pain never becomes daily for her and that she stays healthy and does not have the other more serious complications I’m facing any time soon. The good thing is she has felt the pain during what we call pain crises so she knows how serious the pain is and can be but I still hope that never becomes daily. I am fortunate though to have people who try to understand our be empathetic if they can’t understand.

  • I really appreciate your post, but I’ve had lupus since I was 5 and am 28 now. I’ve been diagnosed with, pseudo tumor cerebri, central pain syndrome, fibro, plus about 8 more diagnosis’s. In all that time my brother who is 9 years older and lived with us never came to see me in the hospital, never asked me how I was, and openly says no one can empathize with what I am going through. The rest of my family has been even worse, with one uncle showing up in m y hospital room after I went blind from pseudo tumor screaming at my to stop ******* faking it. The level of horrible behavior was shocking. So maybe I am not so nice but every day I hope one of them gets sick, even a little so they can learn how their callousness affects others.

  • mo

    Sonja, What a terrible way for Justin to “get it”. My sister has auto-immune issues, so we understand each other. Great post.

  • Kitty

    I have Ehlers-Danlos Syndrome (as well as Fibromyalgia and POTS) and I’ve been with my (amazing, wonderful, brilliant, incredible…what other words are there for awesome??) boyfriend for nearly five years. He was always really fit and healthy and UBER active. He’s always been understanding — more and moreso with time, too — and I used to tell him I was okay with him not “getting it”, because the only way to really understand it was to be in a similar position. It meant so much that he tried at all — most of my family don’t even do that much. But that’s a LONG rant waiting to happen, lol.

    A couple of years ago, after he caught one HELL of a bug while trekking in Nepal and spent a few months recovering, he lost a LOT of muscle. I’d always known he was a little hypermobile, but as he lost muscle, it became more pronounced. Even once he was over that recovery period, he still had very little energy and his joints were always hurting, especially his knees (he’s also quite bow-legged and his knees are rotated).

    He’s now been diagnosed with Joint Hypermobility Syndrome, pending diagnosis of an underlying connective tissue disorder. I don’t want to say EDS, but it’s pretty likely =[

    Because he’s always been so fit and active, it’s never been much of a problem for him. He’s always had unusual aches and pains, but like most of us EDSers, he just thought that was “normal”.

    Now he really, truly gets it…and I wish *SO* hard that he didn’t =[ <3

  • Kandy

    Thank you for your article. I have an understanding family. They “get” it when I can’t do things that they enjoy. I will be 40 in a week and for 28 years I thought I was the lucky one, not having any illnesses that family members have. My sister (42) was diagnosed as a juvenile diabetic at 18 years old and has been insulin dependent since. My mother and grandmother have diabetes mellitus type II. Everyone in my immediate family and extended had to wear glasses to correct their vision. I was the lucky one. No glasses needed, no insulin to inject and no glucotrol to take daily. My father is Manic Depressive and refuses to take medication for it. Well, I’m not so lucky after all. I was diagnosed with Lupus in 2004 via skin biopsy and labs. I didn’t let it get me, at least I thought. I have recently been diagnosed with fibromyalgia, Manic Depression, and being tested for MS. I think I would rather have the insulin pump my sister has. Seems less painful than my conditions 🙁

  • Jenna

    He should try RSD on for size…but sometimes God sends us those tests as learning experiences, and it sounds like he’s getting just the message he’s supposed to………..I wish there was a “test” sufficient enough for my own family, but I am grateful your brother, at least, is learning what God intended…

  • My kids have Asperger’s – that’s hard enough for them to deal with. Every time they have a rash or a tummy upset, or an ache or a pain, I panic that they might be having symptoms of lupus.

    My niece had renal failure for unknown reasons a while back, and I panicked. (She’s fine – back to being a competitive athlete – no sign she was ever sick.)

    Knowing how my life has been changed by lupus, I constantly fear for the people I love that something like this could happen to them.

  • JUDY

    sonja-your article spoke to me in a very real way. i have had fibromyalgia for about 15 years now, and, unfortunately, my daughter has gotten the chronic fatigue part of it. she battles it well, yet, still has migraines and tiredness. multiple spoons to you!

  • Sonja, very moving and true article. I have Lupus since 1999 and MS since 2000. I feel everything you are saying in your story. I still to this day have to struggle with my family and some friends that have no clue as to what I go through every day of my life. It is a shame that it took your brother’s illness to see what us “spoonies” go through. Thank you for sharing this story with us. 🙂

  • Erin

    thank you for writing this.

  • Aimie

    I have been sick with chronic illnesses dating all the way back. They still do not understand. My father will not accept my three auotoimmune disieses. It is uphill battle everyday to be understanding but continue to be spoonie Which is like two worlds collide everyday because I live five minutes from my parents.

  • Janet

    Thank you for writing something I feel.

  • I have had lupus for 12 years now. This post really spoke to me because of family friends that have recently been diagnosed with fibromyalgia and because of the recent death of a family
    friend and the cause of death was lupus. You never want anyone to have to deal with these things, especially not people that are close to you..