I'm 18, and I've had my main AVM in my left calf for over two years now which is roughly the size of my fist, and it can't be fixed. I have another AVM in my left foot (which was cut out at the age of 14 and miss diagnosed, but grew back), I have an AVM in my left thigh, and an AVM in each wrist.
on Thursday I found out I have to wear a compression stocking over my left leg to cover all three AVMs there for virtually the rest of my life because I tried treatment but was told that they can't be fixed.
When telling people about my situation they often compare it to having cancer and stuff like that, which really offends me because my problem is still serious and I should be allowed to get upset about it.
How do other people respond to comments like this? Are there any tips for when people make nasty and rude comments?
I don't think it's fair to compare any illness, disease, or problem to one another as no two are the same, and no two people suffering from the same problem goes through it the same.
Are there any tips for dealing with people that do this? because it happens to me virtually every time I try to talk to someone. :(
I'm so sorry to read of your plight, but please don't give up on your friend - its very difficult for others to understand that what you have is so very rare that no two AVMers have exactly the same deficits, concerns (and even emotions) as each other. Thats why we encourage each other to vent (and then to look for any positives we can find)
Stay strong Alinta - and resilient. You know there are other AVMers who are happy to communicate with, and meet, you. Communication is the key - let the world get to know you, my friend.
It really is not fair for people to say things when they don't understand. Hang in there, Alinta. Have you joined the group on this Network that will understand.... Great people...
Hi Alinta. I actually think what you wrote on here would be the perfect thing to say next time you see her. If she is a true friend she will understand. On the other hand do not forget true friends…forgive one another. Most young people have never gone thru a major health ordeal. I would not be surprised that later on in life when this person does have a health problem that she will look back at what she said and kick herself.
I chuckled a little when I first read this-it reminds me a little of when old people get together and start talking about ailments, "well my arthritis is a lot worse than your lumbago..........."
What you have is a brain injury/trauma/injury. It's not like cancer or anything else. It is what it is.
As the parent of a now 28 yr old daughter, I recall the normal everyday drama of what she dealt with at 18, and she didn't have any medical issues--just normal teenage girl stuff. WOW!
It's important to have good friends at that age. Not really an easy way to know if your friend was aware of how the comment hurt you, or if she had some deeper meaning to it.
You will encounter rude, ill informed, mean, and KIND people all the time. I think I'd come up with some responses to use in these situations.
A few nice ones that come to mind are:
How wonderful (or unique or special or puzzling) of you to say that.
I don't really get much of the normal teenage problems, luckily haha.
Yeah it's really shocking how some rude people feel the need to share their opinions (like when a seemingly healthy girl gets out of a disability parking space and an older woman feels the need to grill me for how inconsiderate I am to the people who ''truly need that spot'')
I guess sometimes I just have to let it go over my head when people don't understand what they're saying.
Hi Alinta - That has happened a few times - and then I learned to "compartmentalize", and saving AVM-related questions and comments for here simply to avoid that kind of response - I'm sure Ben and everyone on here appreciates that =).
Although I'm sure that your friend had the best of intentions???, those types of comparisons can be flat-out ignorant - no offense to your one friend.
You have a difficult problem with these AVM's, the pain of them, how they grow back far too often and sometimes get worse when they grow back. Yes, at this point in your life, it's not terminal but quality of life has its issues too. If bad enough, the AVM's can become life threatening.
My thought on this subject is that comparisons are not fair. Your pain is real as is your friend's pain. You weren't being heard by your friend, she's probably angry and took it out on you. Hear her, but don't take everything she says to you as harshly as I'm sure it feels. Let her know you hear her and feel for her situation as ask her, or TELL her that what you're going through is upsetting and painful as well. As her friend, you hoped she'd care enough to listen. Comparisons in any situation are all but useless.
Did you know about Christopher Reeves who became quadriplegic? His wife would come back from her day and complain about things that didn't go right. As a loving husband he listened. He did not attack her by complaining that his situation was worse!! She was allowed to have a bad NORMAL day and complain even though his day as a quadriplegic in a wheelchair was definitely worse. Both had issues, he listened and loved her.
I had breast cancer which was dealt with by a single skin saving mastectomy with immediate reconstruction. No chemo, no radiation. Shockingly enough, those who endured chemo and radiation would get upset with me!!? They had both breasts with their tumors removed or the same as me but with chemo and radiation yet felt the need to compare! So, yes, comparisons are horrible and hurtful. Tune out the comparisons, ask not to be compared, and try to keep the friendship if you can. Your choice.
Apples and oranges. It is very frustrating. I am sorry you are going through this with your friend. Relationships seem to be tested in a health crisis. I hope you are able to work it out because you seem to care a lot which means you probably are good enough friends you can be honest about how you feel.