I am struggling... really struggling, I have a chronic disability known as EDS (Ehlers–Danlos syndrome). It’s starting to effect my everyday life as well as with my social and family life. I live with my parents and they know all about my problem (my mother being my primary caregiver).
I have been finding I have been getting chronic pain all they way up and down my spine and right shoulder. It is getting harder and harder to walk and do my job (I take commissions and such for anthro art). I tell my mother about my pain and she just shoos me off like it’s nothing; no sympathy no help. it is starting to highly frustrate me and my everyday life, resulting in me getting angry and frustrated more and more with my family. I don’t know if this is part of growing up (being in my mid teens) or it is because my parents are being complete douches (please excuse my French).
Can you please tell me how to explain what I am going through to them, the pain is terrible and is frustrating me. My mum just doesn’t listen when I tell her, she is constantly making me go around and get stuff for her (like food, the phone etc.). She just doesn’t understand the pain I am going though.
Thank you so much for your help, Papabear.
a struggling ferret
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First, a note to my readers for explanation. Ehlers-Danlos Syndrome is a serious condition affecting connective tissues because the body cannot produce stable collagen. The most common symptoms include joint pain, loose/unstable/hypermobile joints, hyperextensibility of the skin (resulting in skin that is more easily bruised or torn), pseudotumor formation around resulting scars, spinal and other skeletal pain. There are several types of EDS, most are not life threatening but Vascular Type EDS can shorten one’s lifespan by damaging valves such as those in the heart.
There really is no treatment currently for EDS. The main precaution doctors give is to avoid getting too much sun and limit physical activity because the most problematic problem with EDS patients is how easily their skin and joints are injured, which can lead to more serious problems such as infection, damaged joints, and early onset arthritis.
Assuming you are not overreacting about how your parents treat you and they really aren't being that dismissive of you or making you do too much, and if your parents are putting you at risk for injury, then, given your condition, Papabear would say this borders on, and perhaps IS, child abuse. Have you, thus far, been physically injured because of what your family has asked you to do in terms of chores and errands? Do you feel their actions might cause you serious injury? Then this is serious.
If, on the other paw, you don’t feel as if you are in any physical danger (whew!), you might be a victim of emotional abuse. The website www.ChildHelp.org defines emotional abuse, in part, as thus: “Telling a child in a variety of ways that he or she is unwanted, having a lack of attachment, showing no interest, not initiating or returning affection, and/or not listening to the child. Not validating feelings. Breaking promises. Cutting the child off while he or she is speaking. Pretending to hear concerns, but then disregard them.” More definitions are outlined here: http://www.childhelp.org/page/-/pdfs/Child-Abuse-Definitions.pdf.
Depending on how badly you feel you are being treated, you can try a couple of things: 1) go back to your doctor and have him or her explain to your parents that you are suffering a serious chronic condition and that they need to understand that you can’t do the same things that other children might easily do for their parents; it could simply be that your parents are in denial about your illness and they need someone to give them a wake-up call; 2) if that is not feasible for some reason, you might try to find a mediator, someone you trust and who your parents also respect, such as a trusted uncle or grandmother. Tell him or her what is going on, how you feel, and see if they will talk to your parents about it. If this doesn’t help, you might consider 3) contacting a child abuse hotline and asking a professional for some guidance on the matter. Remember, Papabear is not a professional counselor and cannot give you authoritative advice on this matter, so it might be time to seek some help from someone really trained in recognizing child abuse and giving you some needed guidance.
You need to get your parents to listen to you and take you seriously. Papabear hopes that a mediator of some sort will do the trick and that your parents might better understand your special needs and be more sympathetic to you. EDS might not be as grim a disease as, say, cancer, but it is a very real and painful condition and they need to get that into their heads.
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