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Crohn's Disease
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Posted 8/27/2011 12:04 AM (GMT 0)
Hello there! I'm so glad to be back on this forum! It's been about a year since I was last on under a different username. So many things can change in a year right? lol =) Unfortunately they're not always for the better. That's actually what my question has to do with. Keeping people updated with my health and regular life is turning into quite a task. Normally I am a very patient person but when you're sick and feel like garbage most days you begin to lose that patience. My problem is that there are so many people that want to know how I'm doing and what I'm doing that I can't even keep up with them all and honestly I can't even remember half of the time myself what's been happening. Anddd if I'm lucky enough to be feeling well and on the phone or out talking to people the LAST thing I want to do is talk about this irritating illness. I think most people are just curious and it's obvious that some are just making conversation but I don't understand why others don't realize that this disease is already taking over my life and the last thing I want to do is talk about it all day too.. It doesn't help that my mom is a talking machine and she tells everyone everything even when I ask her to keep things private or general.. Does anyone have any advice what to say to people to kind of get them to understand where I'm coming from and maybe change the subject? Also any ideas as to how to get my mother to stop telling everyone we know and even just the people that she knows all of my business. I'm sick of being known as the "sick daughter" and tired of rambling on about my health to everyone that speaks to me.. Thanks for reading!! =D
Posted 8/27/2011 8:57 AM (GMT 0)
Oh, boy, can I relate to that one. I've no real advice to offer on the parental chatterers, as I never had much success in solving that problem myself. It might help to ask your mother why she feels the need to share so much - I had a parent who felt the need to convince others of how sick I was, thinking that that would help me in some way... but it didn't, of course. If there is some reasonable reason for your Mum talking as much as she does, and it is done out of a desire to help in some way, then maybe you can convince her that there are other, better, ways of helping?

It may be that she's upset about your illness and needs support for herself, in which case maybe a parents' support group (either in person or online, but preferably - for you - not here, I think).

As for enquiries about how you are, I generally say something vague along the lines of "today's a good day", or "up and down; you know how it is", or "struggling, but so glad I was able to get out and see you" and then try to change the subject. However, I'm not direly ill right now, and it's harder to change the subject and deflect people when you really are obviously sick.

I dunno, really.

Like you, I found it a HUGE struggle to fight being defined as "the sick one" and still haven't completely succeeded, though I've made huge progress in it this year. One helpful strategy that I've found is to develop an interest that obsesses you so much that you can't help talking about *it* to everyone, in boring detail, instead of about your illness. I'd much rather be known as the obsessive guinea pig and gardening lady (look out! don't get her started or you'll be stuck listening to her for hours) than the miserably health-focussed Crohn's lady.

If you're very limited by your symptoms, following a theme with your reading might help (history? literature? languages? current affairs?), as might taking up a craft or a hobby, to as obsessive an extreme as possible. I know one of the fibromyalgia moderators gets a lot of distraction out of her genealogy hobby, and that helps her to manage her illness, her moods and her concept of herself.

I'm not sure if that helps much, but will keep thinking and talking with you about it if you like.

Apart from anything else, please know that you have my sympathy and empathy. I've been there too, and hated it (and it made me feel disempowered and angry).

Ivy.
Posted 8/27/2011 4:02 PM (GMT 0)
Great user name. Steak is my fav, lately.

I agree with Ivy, if ppl are asking, give them a vague answer. It might be enough for them. Some people might only be asking out of politeness and don't want big story anyway.

Close family will probably want to know more out of concern for your well-being, but if you don't want to talk about it, you should be able to tell them so with respect. They might press anyway, because that's what family does sometimes.

Your mother probably feels helpless that she can't fix your illness. Ivy is probably right that your mom is seeking support by talking about it with others. I imagine it is pretty awful for a mother when their child is diagnosed with an incurable (and often debilitating) disease. She, and other family, will probably want to know you're okay emotionally too.

As hard as it is, you won't be able to stop your mom from talking about it, but you can let her know your feelings, like if it embarrasses you, etc. Maybe you can suggest a support group to her? Maybe she can come here or another forum.

Hope this helps.
Posted 8/27/2011 6:52 PM (GMT 0)
I guess I probably should just nicely say to some people that I'd prefer not to talk about it.. =\
Also I like the idea of getting a hobby that I'm really passionate almost obsessive about. Haha. It reminds me of when I was in the hospital I used to turn the air conditioning up as high as it would go so that my room would be so cold no one would stay in there for very long bothering me. =) I think you're both right about my mom though. She probably does just want to talk to someone for support sometimes. What I don't understand though is that sometimes I'll talk to someone and say something kind of vague or just say oh I'm doing pretty good. Then later she'll talk to them about me too and they will tell her what I said and then she'll say WHAT??! OH nooo no no no no. She's not doing good... She was just in the ER last week! Or something like that.... So then people won't trust me and they'll say so how are you realllllly doing?? I guess that's where I'm gonna really have to put my foot down and just say I'd rather not talk about it..
Posted 8/28/2011 1:25 AM (GMT 0)
LOL. Oh, boy, I can relate to that, too. And the entire Western world really doesn't need to be told about your symptoms and experiences, especially when you're struggling to deal with them yourself.

My 2c is that saying you'd rather not talk about it might be interpreted as being rather rude; plus, it can close off a caring and sympathetic ear that you really may need at some point in the future. Maybe it would be better to say something along the lines of "I'm having a hard time dealing with it just now, and would love some company and cheering up and distraction: can we talk about something fun instead?". That way, the person will feel valued and acknowledged, and know that you really do need them, even if you don't want to talk about medical stuff just now.

It's a hard one, and there are no easy answers, especially when you have relatives undoing your hard work. When you're older, and have moved away from home, you may be able to control the amount of information you give out, but for the time being, it's going to be difficult.

I do think you'll find that your Mum is trying to muster some more support for you and for herself, by making sure that others know just how sick you are, and just how hard things are for you (and for her), and so perhaps the trick will be to find some way to deflect that love and concern into a route that isn't so embarrassing for you.

Just had a thought - could you set up some sort of internet page (blog? email list?) where you keep others up to date with your medical situation, providing information that *you* choose to divulge, and then provide the URL to as many people as possible? That way, people will be able to get information about your medical health from the internet, rather than having to ask your mother.

I remember that one of our members here used to put a coloured magnet on her fridge that would let everyone know how she was feeling that day, so they'd know without having to ask.

Thinking of you. It really is a tricky one, hon.

Ivy.
Posted 8/28/2011 7:18 AM (GMT 0)
Dawg - yes, but I think if you're seventeen and trying to do all that developmental stuff - building a sense of self and identity; detaching from your parents; etc etc etc - and you then have your parents continuing to speak on your behalf, and you have other people defining you as a sick person when you want to be seen in other ways, then that can be tough... and perhaps even damaging in the long term.

You're not alone in dealing with this, Steak. I'm pretty sure that you'll find books and articles, if you look, saying that this sort of problem is fairly common in young people who are dealing with chronic illnesses. It's hard enough for healthy people, without adding illness in as well.

That said, I do agree with Dawg that seeing things from her point of view might help... but I do think (and this is just my personal opinion) that your Mum needs to see things from your point of view, too, and respect your wishes when it comes to divulging medical information.

Ivy.
Posted 8/28/2011 7:25 AM (GMT 0)
Here's one example:

http://www.ajol.info/index.php/cme/article/viewFile/43759/27282

A few selected quotes:

"Carers of medically ill adolescents must attempt to foster just the right amount of contextually appropriate dependency and normal illness behaviour (e.g. adherence to medication regimens, dietary restrictions, outpatient attendance) to facilitate adequate monitoring and treatment of their medical condition, while simultaneously avoiding entrenching the sick role and perpetuating inappropriate regression and excessive dependency...This applies equally to parents of ill adolescents and to the medical professionals who look after them, often over many years. " {emphases mine}

As I said, I'm sure you can find other articles if you look. I just did a quick Google using this phrase:

"developmental problems" teenagers "chronic illness" psych


Hope this helps.

You might even find it helpful / useful to talk to a professional person about this, Steak. Do you have a caring doctor, nurse or psychologist you can speak to, privately? Is there someone at your school you can talk to? As I said, this is recognised as a common problem, and someone who is properly trained in these issues might know of some effective strategies to help you.

Ivy.
Posted 8/28/2011 10:13 PM (GMT 0)
Dawg - oh, I know, and you're a parent too, which makes your advice and insights incredibly valuable.

Dawg is right, Steak, in how hard it can be to look after your illness once you're an adult. Me, I find it's the equivalent of a part-time (sometimes full-time) job in itself, and incredibly tiring. So you are lucky to have someone to help you with all that, but that still doesn't mean that your feelings aren't valid.

One thing I've been wanting to say - and I'm probably not going to say this very well - is that it can be incredibly difficult to relinquish the role of spokesperson / advocate for someone you love, once you have held that role for some time. In some ways, I was that person for my mother as she was dying of cancer, and it almost becomes a hormonal / elemental drive: you will fight and talk and speak up to defend and protect and advocate for that person, even if it's to your own detriment. And even when the person is dead, it can be very hard to walk away, and then stop, and it can take a long, long, time (if ever) for that hormonal drive to end. And that's before you throw in the famous maternal protective instincts. Your Mum has been speaking up for you for years, and I think you'll find it'll be hard for her to stop, even though she knows you're growing up. She loves you, and the protective urge is incredibly strong.

Are you going back to school this month? Because, if you are, here's your chance to start working on giving other people new ways to think about you and define you :-). Is there a club you're thinking about joining, or a class you can throw yourself into and become really passionate about?

Ivy.
Posted 8/28/2011 11:35 PM (GMT 0)
Dawg said:

"It is very common for caretakes to become codependant and consumed with those that they are trying to help treat. This codependency can become so involved that their lives can be altered like that of a drug addict."


Yes, yes, yes. Spot on, Dawg.

It is important for you to have identities other than "the sick daughter", Steak, just as it is important for her to have identities apart from "mother of the sick daughter". And this needs to be addressed NOW, because you're probably going to want to be moving away from home in the next few years, and taking on more responsibility for your own life (I think that process is already beginning for you).

I agree that it may help your mother to find other people to talk to, and to provide support for her in what has to be a very upsetting, exhausting, and devastating situation.

Crohn's is rarely a death sentence, but it *is* a life sentence, and NO parent would wish this illness on their children. It has to be so hard for her, to see you suffering like this, and not having the fun that she wants you to have.

Ivy.
Posted 8/29/2011 12:21 AM (GMT 0)
Thanks Ivy and Dawg for all of the advice and insight so far. I was really glad to read the comment about it being important for both my mother and I to develop our own identities besides being the sick daughter and the sick daughters mother... Thats exactly what I've been trying to tell my mom I just haven't thought of a way to say it yet... I don't think she understands that I don't want my whole life to just be about being sick... And I can definitely see how this disease is kind of becoming her drug lol... I know that she just does all of this because she cares and I'm her baby but there is so much more to life that this disease even though it feels like everything sometimes.. I have an older sister too who goes to college half way across the country and needs her very much as well. Sometimes I think my sister even looks down on me a little and feels that I'm spoiled because I get all of this attention and I don't even want it all lol.. Also to answer your question Ivy I just started school early and graduated high school younger. I should be starting my first year of college this year but I'm taking at least a semester off to get my health in order.
Posted 8/29/2011 11:03 PM (GMT 0)
Hi Steak,

Yes, it can help to have the right words to use when trying to explain your feelings to somebody. I've found that too.

I was thinking about you, last night, and I realised that you and your mother don't just need to see yourselves differently, but that you probably need to cast your relationship differently, too. I don't know you, of course, but it is possible that your illness is where the most loving and caring parts of your relationship occur. Do you have your heart-to-hearts in the car driving to and from appointments? Can you talk intimately about other things, or only symptoms? Do you have other activities that you share with each other, and when you can enjoy each others' company?

Perhaps it might be nice to start planning some extra, fun, activities with your mother, where you can enjoy each others' company as people, and where your mother can start to enjoy you as a grown-up daughter. You might like to take a weekly drive to explore some new part of your region, or start browsing through antique shops, or decide you're going to sample every coffee shop (or cake!) in your town, have a weekly video night at home, sit at the kitchen table on Sunday morning with a block of chocolate and just have a chat, do a jigsaw, play a board game, whatever.

She might also enjoy helping you to improve your independent-living skills this year. Can you cook? Budget? Set up a bank account? Drive? Do home repairs? If you ask her to help you to learn some skills so that you can live by yourself (or help more at home), she'd probably be touched, and she'd be able to see you as a young woman who wants to spread her wings and build a nest and life of her own, rather than just a dependent sick daughter.

I do think the relationship is important. If your mother has other ways of showing that she loves and cares about you, then perhaps it won't be as hard for her to lose the role of "mother of sick daughter". And it could be a lot of fun for the two of you, as well :-).

At the same time, I think it's important for you to develop interests and activities of your own, so please don't share everything with your Mum!

How strong and mobile are you? Do you feel as if you might be able to do a little activity out of the house, or are you pretty much homebound just now? Either's fine: it'll just help us to understand where you are, physically, just now.

Best wishes,

Ivy.

ps. Congratulations on finishing school, and early! Wow.
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