Beyond Being the Black Sheep

Not all families handle having a member with chronic illness in the best of ways. Unfortunately, from what I’ve seen in support groups, most seem to end up with the individual already struggling to feel more like an outcast. This seems especially true when you’ve got a disorder that’s rare (or at least rarely diagnosed or understood). Now, maybe this anecdotal evidence is because those that do have wonderful familial support networks aren’t seen on the message boards as much. Most of the times, people rely on support networks on the internet when they are lacking in support that can be physically present. I’m not going to assume everyone goes through a similar situation, but I felt it was important to get out there for those that have.

Why Do So Many Zebras Feel Like A Black Sheep?

It’s ingrained in us to expect support and comfort from those closest to us, our direct family members. Humans are built to want a close bond to their parents and it’s completely natural. When you’ve got a disorder that presents unique challenges however, it can strain the bonds of that relationship through no fault of anyone involved. Sadly, this can also have long term effects on the way a zebra child develops into an adult.

I will use my own personal stories as an example here. I first had noticeable hip problems with clicking and subluxation around 4th grade. When I went into the pediatricians office and complained about it during one of my check ups…the doctor told my mother and me that children my age don’t have joint problems like I’m describing and I probably just need more exercise. I’m either looking for attention or I’m weak. To my mother, it seemed pretty logical. Looking at a lot of normal cases, I can see where it made sense to her. So she acted accordingly and I was deemed the drama queen. Phrases like “You’re always complaining about SOMETHING!” became common place. Doctors were used as a type of threat, “Well if you feel that bad, we’ll have to go to the doctor…”, always in a tone that was a plea for me to knock it off.

Other family members weren’t of great help. Then again, when they hear stories about how you’re overdramatic…they’re just responding to what they’ve taken as truth. To be honest, Ehlers-Danlos presents in almost unbelievable ways. You’re a young kid and you have joints that just kind of damage easy but nothing seems to show up on exams? You say things hurt but there’s not diagnostic that shows any kind of damage? Sounds like a kid trying to get out of gym class to most people. I’m not going to make excuses or pretend that what I experienced was okay, but I make it a goal to try to understand why hurtful behavior happens whether I approve of it personally or not. I could lay blame to my mother for not finding me a new doctor or the doctor for being an ass, but that doesn’t really help anything aside from helping to acknowledge that it wasn’t my fault. Either way, it let to me feeling like I just didn’t fit in the family.

But You Talked About Long Term Effects?

This is much more than just someone complaining that mommy and daddy didn’t give them enough hugs as a kid. When you’re developing, you don’t have the full power of your frontal lobes to reason out things. Your experiences as a child set the paradigms for how you learn to see the world. When you are told that you are just looking for attention, or treated as a drama queen when it comes to your physical health…that becomes part of your world view. Some will accept it and intentionally act out to better play the role, some will internalize and feel that they can rely on no one, while others will simply get angry. There’s no one set way in which people in this situation will develop. All people are just trying to do their best to survive.

This does start to impact long term relationships with friends, family, partners, and even doctors. Again with my story as an example, I internalized it as I was inherently flawed. That maybe I was just weak like they said. I constantly pushed myself despite pain to do tasks that my peers could perform without issue. I stopped complaining unless the discomfort was severe and I wasn’t able to fake it anymore. I thought that the pain I felt in my joints was something everyone felt, and I just was too weak to handle normal life. I didn’t ask for help, and I didn’t have a good communication with any of my doctors. Growing up as I did had taught me that there will be no help for my issues…so why bother trying for any? And let me tell you, you can’t have a healthy relationship with a partner when you think it’s normal to not discuss when something is upsetting you, no matter whether it is physically or emotionally.

It even had a negative impact on my spiritual health as people told me God doesn’t like people who lie (insinuating again that I was a drama queen). It got worse as I started to show signs of clinical depression because maybe if I gave my problems to God, I wouldn’t be struggling so much. I even had a doctor tell me that if I went to church, maybe I wouldn’t have any of these problems. Being raised in a religious family, that further added to the feeling of isolation as it was hinted that maybe I was just a bad person and being punished. I felt abandoned by family and then by God.

The core problem, was that nobody was listening to me or trying to do anything about the suffering I was under. Granted, it was because to them it seemed to fall outside of their medical knowledge and didn’t make sense. Still, there are a number of problems that developed through my life that have roots in being made to feel like I was so different from everyone else. I pulled back from a lot of social interaction. It only added to the clinical depression and anxiety as I started to really believe that my worth as a friend or partner was limited because I’m inherently broken. I started to believe that doctors weren’t worth going to because all of them (excluding my current medical team) treated me like I was making it up. This kind of thinking was well cemented into my mind before I even approached 18. I was the freak that nobody understood, and nobody wanted to understand.

Are You Saying Children Should ALWAYS Be Believed?

I’ve seen my fair share of children telling tall tales and been there when my peers tried to contrive stories to get out of gym class. So no, I’m not saying that the solution is to just believe children. I don’t think I could even give a good answer for a blanket solution. However, I do think that if people were more aware of what it can feel like as a child growing up with an odd chronic illness can be…maybe it’s something that can just be kept in the back of the mind as they watch other children grow. Perhaps we can foster an awareness that instead of treating a kid as “that one that’s sick all the time” they should be shown the same support that all children require. To not pick on children for being weak or damaged because they suffer with something out of their control.

Maybe if we share stories of being told by pediatricians that we were just weak when in fact we have a collagen disorder that created severe issues…maybe we will have more people being diagnosed before something more serious damage is done. Maybe we can foster future physicians to carry more of a compassion for when things don’t fit into a nice and neat diagnosis box.

Once The Black Sheep, Always The Black Sheep

So far, I’ve talked only about the impact on children, but this kind of dismissive attitude doesn’t just impact children. I can’t count the number of times I read that fellow zebras are worried about going to family events because someone there always nitpicks. Why are they tired? Why do they have a cane? Why don’t they work more? Why are they complaining more than Grandma? Why do you act sick when you look fine? Why are they on a strict diet? Why did they go for surgery? Being offered a slew of useless advice. You can probably imagine a lot more than what I’ve listed here, as most of us have encountered similar statements on a regular basis.

So many zebras have this fear of talking with family. Some of this could be solved by explaining about what your illness does to you. So often though, no amount of explaining will help these folks because too many face family members that would rather stick their heads in the sand. It is more comfortable for them to live in denial than it would be to face the truth about rare illness. This is not always done maliciously, even if it feels like that to the zebra in question. I feel it’s important to state that. People will always have a hard time coping with things they don’t understand. Those of us with the disorder, we don’t really have a choice if we want to survive. For them? Life makes sense when there’s cause and effect, when there are problems that are common and can be fixed. Ehlers-Danlos is neither common, nor fixable. That’s a huge thing.

It doesn’t make their avoidance of truth okay, and I am in NO WAY insinuating that it is a viable reason to treat another person badly. What I am saying, is that don’t assume your relatives are terrible people because they can’t understand. I am saying don’t burden yourself with constantly trying to prove to those difficult members that you are, in fact, sick. I’m saying you don’t have to accept their behavior to you as okay, but it may be in your best interest to accept that it is the way they are. No matter how we may wish them to be different, they are just people.

Where My Story Led Me

I don’t have a wonderful relationship with much of my family. Some of this is because I am a fairly unique individual compared to the rest of them outside of my disorders. I make jewelry out of bones and keep snakes and spiders as pets. I left the church and found a new spiritual path that is fulfilling. I dye my hair fun colors when I get in the mood. I’m an odd duck in comparison. I set personal boundaries for what I will and not tolerate, such as I will leave a conversation if it starts to smell of condescension. This doesn’t come from a place of anger or pain, simply that I’ve got better ways to spend my time. With Ehler-Danlos constantly threatening to strip things I enjoy from my life, I don’t want to be a part of wasting my time and energy on pointless arguments.

When I say these things like this face to face, people seem to imagine me storming out or being petty about it. I can assure you, that’s not what it’s about. It’s simply acknowledging that the road that I walk is hard for them to understand. They are not in a place where they can feel comfortable providing the support that I sometimes require. It doesn’t make them inherently bad people, just as having Ehlers-Danlos doesn’t make me inherently a person broken in all ways. It just means that we’re not compatible in that way. Wishing or pushing them to be different, is as pointless as them wishing and pushing me to be something other than a zebra. I also see it as a type of self-love. I care and respect myself to not try and deal with things as they are, but instead foster a group of close friends that can understand and are in a place that they can comfortably offer support. We all deserve love and support of people that care, and there is nothing wrong with getting different types from different people.

It’s normal to feel outcast and angry if you happen to be in a similar situation. Those emotions are perfectly healthy. But we also owe it to ourselves to deal with those emotions in healthy ways rather than trying to drag horses down paths meant for zebras and then continuing to feel angry and hurt that those same horses just don’t get it. If you’ll forgive the continuation of the zebra and horse metaphors, I feel it’s the responsibility of other family members, that when they see on of their herd standing out a bit, to understand why they’re different and respect that they’re just a different breed. I also understand that just because I feel it’s a responsibility that falls on their shoulders…doesn’t mean it’ll happen that way or they’re capable of doing so.

Sometimes, you’ve just got to find your own herd. Or in this case…find your DAZZLE!