How do you tell your parents (who are not medical professionals) that they don't have permission to give you advice on diabetes. My family (as well intentioned as they are) has no concept of what I go through on a daily basis. Nobody in my family history has had diabetes. I was diagnosed at 24 years old (I didn't live at home)...I didn't even tell my family I was in the hospital. I need my family to stop telling me how to manage my diabetes. I know what my doctors want me to do...I need them to stop with the comments about every little thing I do or don't do, eat or don't eat. What is the best way to approach this sensitive topic?
Please keep in mind when reading this response I have always had a terrific family and wonderful support system, so my advice is just based on my ideas, not experiences:
I would say the best course of action here would be to tell your family about your T1D. If what you say about them, "My family has no concept of what I go through....Nobody in my family history has had diabetes," is true, how can they understand your diagnosis and what you go through if you do not tell them? Education is the best tool to rid the world of ignorance, and so right now is your chance to be an educator to them. Hopefully, if you tell them about what having type 1 diabetes means, symptoms, history, pretty much anything any doctor has ever told you, and what you go through daily, they will see things from your perspective, stop the little "comments about every little thing I do or don't do, eat or don't eat," because they will then know why these statements are incorrect and hurtful. They may even become more interested and want to learn more, which could lead to positive advice from them.
Now, if you do NOT want to tell your family anything, for whatever reason, you should ask them politely to stop giving you advice, telling them perhaps that it is simply you who knows what choices to take which are your best course of action. I cannot think of anything more direct.
The first option is definitely the better idea, however, but best of luck!
I always believe that I am are responsible for teaching people how to treat me. If someone gives me unsolicited advice, I sometimes say "oh" and then do what I want to do. I would ask what's your reaction when advice is given? angry shouting match? do you ignore them? do you respond just to shut them up? i think your own reaction is the only useful thing you can control and in time things will improve if every time the nagging and comments are met with exactly the same response. oh, and don't expect them to be happy about it ;-) good luck.
I think if you truly believe that your family is well intentioned and are giving you advice because they care about you, then you need to educate them. Though I'm wondering if you didn't trust your family enough to tell them you were hospitalized if you have had other issues with them. (Not trying to offend you by asking that.) I also wonder why you think it is a sensitive topic? It never has been hard for me explaining it to my family (who I'm very fortunate are super understanding and want to learn what we have to do to take care of our son.) because I just say - this is what our doctors have said to do. I do realize that many people believe whatever they hear on the radio, TV, internet that they will just share with you ad nauseum, no matter what you say. Is it sensitive because you don't feel like sharing it or because you have to contradict your family members?
If you aren't comfortable or patient enough to do educate them on your own, then maybe get them a book (Think Like a Pancreas is one of my faves) or send them links to a couple good websites. If you are patient enough, then I would acknowledge their advice and explain why you're doing what your doing. It will take a while because they AREN"T living it everyday. Even if there is one person in your family you really trust, you could say - hey, follow me around all day to day and I'll show you all the stuff I have to do. Then that person can get a sense of what you are going thru and help to advocate for you with the rest of the family.
Totally agree with Joe that only you are in control of how you respond. If you choose to go the route of ignoring, then you have to also choose not to let it get under your skin while they give you tons of unsolicited advice. As I tell my 5 yr/old when his 2 yr/old sister is annoying him, "Ignore her means to pretend that she isn't talking." That can be hard to do.
I am the only type 1 in my family also and I have had a lot of well meaning but un-informed people make comments to me. A while back I had a few days with unsuaully high BG's (high 200's). This was before I was on the pump. My mother in law heard about this and made a comment to me "You just need to exercise more. You should go jogging or go to the gym a couple times a week." That comment actually made me mad. First off, I do about 30 minutes cardio on a daily basis. Secondly, I am less than 100 lbs so it really bothers me that people constantly have to tell me to work out. I'm not obese or overweight! Does it look like I need to shed a few lbs?!
I am actually a pretty healthy person. I do cardio daily like I said above, and I also eat pretty healthy. We don't eat out often. I mostly cook everything. We do lots of fruits and veggies in this house. I try to do all whole grains. I drink plenty of water, crystal light, or sometimes diet soda. I would rather eat a good wholesome meal than junk. But anytime I want to binge just a tiny bit and eat something unhealthy I always have someone say something about it!!! I was eating some french fries a while back and my sister told me "Those are bad for diabetics. If I were a diabetic I wouldn't eat ANYTHING that I knew wasn't healthy for me." I just kind of laughed and I was like, That's easier said than done. I live a very strict life with exercise and diet but I do have times when I want a french fry or a cheeseburger or some chips! She replied by telling me if she were a diabetic she could manage without those foods. Yeah right... It's impossible to live your entire life without eating ANYTHING unhealthy. Everyone wants some icecream or good deep fried food every once in a while. LOL And plus, I am on a pump and have good control of my BG's. If I can eat 45 carbs of french fries and my numbers are still perfect afterwards, then why not?!
When someone used to make a comment about exercising or food, etc. I used to just be quiet and kind of go along with it. But I'm not really sensitive on that subject anymore. This is my life and I have to deal with it and live with it forever. If someone tells me to exercise more then I speak up and explain to them that exercise alone cannot help a type 1, we depend on insulin! If someone says something about me eating carbs I explain to them I am on a pump and getting insulin just like their pancreas does so I can eat whatever they eat! These people are well meaning but unfortunately do not know what type 1 diabetes is really like. They are your family, you should help them to understand better. I even gave my family some papers on type 1 diabetes so they could read about it!
If you decide to talk to your family, could you include something along the lines of: "Because of the complexity of managing type 1, there will be times where my BG's aren't in range. It's impossible with the medical tools that exist today to keep the same control as a real pancreas does. However, my endocrinologist is very happy with my control given the tools we have (if this is true, lol). However, when other people give me advice about my diabetes, it makes me feel bad because I feel like it's a judgment about my knowledge and control, even though I'm working so hard. And stress actually can make my BG's worse."
[quote user="Sarah"]
If you decide to talk to your family, could you include something along the lines of: "Because of the complexity of managing type 1, there will be times where my BG's aren't in range. It's impossible with the medical tools that exist today to keep the same control as a real pancreas does. However, my endocrinologist is very happy with my control given the tools we have (if this is true, lol). However, when other people give me advice about my diabetes, it makes me feel bad because I feel like it's a judgment about my knowledge and control, even though I'm working so hard. And stress actually can make my BG's worse."
[/quote]That's excellent advice Sarah. I know that my Sarah and I are both a bit sensitive when it comes to anyone questioning why she experienced a particular "bad" number. I always explain that "bad" numbers here and there are just a part of type 1 diabetes and it doesn't mean her control is an issue. Her last A1C was 6.4 with few significant lows, so darnit, don't try to tell me we're not controlling it well!
Even though I recognize that both of us are over-sensitive on this issue, it still makes my blood boil when someone has the audacity to think they know more than we do. Honestly, the people I DO listen to are you guys on Juvenation and the other T1 parents I've met online - because you all live and breathe this as I do.
I often find when someone talks to me about my diabetes the only information they know about diabetes is about type 2. I've found that telling people that I have type 1 and not type 2 has worked when they give advice that is contrary to what I need to do to manage my type 1 diabetes. Since they are well intentioned I tell them that what they are saying is true, but for type 2 diabetes, and then I explain why it's different for me. Plus each individual person is different. Personaly, exercise doesn't lower my bg by much at all. But heat does. So while exercise is great, it doesn't really help me keep my bg in a normal range. It takes a lot of times explaining the same things and being patient about it but eventually they should catch on that you know what you're talking about and are doing the right things for yourself.
First, thank you for your advice. I really appreciate every bodies reply. I am not quite sure how to respond to comments yet because this is my first day on the site, but here goes.
My family does know about my T1D...they just didn't know I was rushed to the emergency room due to temporary blindness caused by severe DKA. My family has been to a diabetic education class with me at the hospital, and they have tested their blood sugar and given themselves pretend insulin shots a few times. They know the routine of a T1D, but they constantly criticize the way I choose to take care of myself.
I have a severe needle phobia and blood makes me queasy, so my T1D diagnoses has been a challenge. The first time the nurse tried to give me an insulin shot I had to be sedated and held down by three or four grown men. My Dad always says he wishes he could take the insulin shot for me and then give me a kiss so I could get the insulin by proxy.
Like I said my family is well intentioned, and they care a great deal about me...I just don't think they know how to talk to me about T1D yet. Normally when they comment I just say "Thank you for caring about me so much. I love you too," but their constant negative comments about my care really upsets me. I also have many challenges trying to care for my T1D because I don't have health insurance or an endocrinologist. I am always switching insulin, testing supplies and such because they are free or at low cost to me. I am not on a pump or a CGM...I didn't even know those existed, so I am excited for the day that I may be able to get one or the other. My parents constantly remind me of how much better off I would be with health insurance, but I cannot get insurance because now I have a pre-existing condition. Before my T1D diagnoses I had never been sick. I was kind of the all American girl ya know. I had 4.0 GPA, scholarships, I played soccer and even cheered for a few years. I was very active and very healthy. I know they mean well and want to help me, but the way they are choosing to help is not productive or encouraging.
Again, thank you all for your advice. I will consider all of your helpful comments and then determine a way to talk to my family. You have all been most helpful. Thank you.
Best Wishes,
AM
Oh Honey I know how you feel about your aversion to needles. You are not the only diabetic that has went thru that. I was diagnosed at 18 and I literally did not give myself a shot for probably the first 6 months. I always had someone else give it to me. There were many days when I would actually cry right in front of people because of my shots. And yeah, I was 18! LOL I have a serious phobia of needles PLUS my shots always seemed to burn, especially Lantus. Finally I got to a point where I hated to ask other people to give me my shots though. It was kind of embarressing and not to mention there were many occassions when I was alone, wanted to eat, and had no one around to give me my shots. So, finally I started to do it myself. It wasn't easy. Heck, it's still not easy. I still don't like shots. But I am more used to them and I don't get quite as much anxiety over them now.
I am now on OmniPod pump therapy and if I knew how easy this was, I certainly would have done it as soon as I was diagnosed. I change my pods every 3 days. It's automated, the cannula is inserted by my remote so I don't have to mess with ANY needles. And it absolutely does not hurt at all! There has been a couple times I've had to look closely to make sure it even went in because I couldn't feel it. You can get 1 free demo pod if you go to their website. It won't have insulin in it, but you can wear it just to see if you like it. By the way, I lead a very active life. I do about 30 minutes cardio everyday and I work on a farm with over 100 animals and the pump hasn't slowed me down any. If anything, pump therapy gives you a ton of freedom!
Anyways, if you want to talk about diabetes or have any questions feel free to email me anytime. Being the only T1D in your family (and in most cases the only T1D you know!) is very hard and sometimes it's just nice to talk to other people who have to deal with this! Rachel.Emily25@yahoo.com
I've found that teaching others about diabetes is a bit like teaching my puppies to do tricks- assume they know nothing and understand that it takes a lot of patience and a lot of repetition. I was diagnosed when I was 12 so my parents of course had to learn how to treat the disease at the same time I did. They were pretty hard on me at first which only made me angry. So I decided to try something.. If I could prove to my parents that I was fully capable of handling the disease on my own with no adverse effects, maybe they'd tone it down. Needless to say, it took a while, but it definitely worked. I showed them that I could take initiative, be proactive, and keep myself healthy- without their constant criticism and in turn, they began to trust that I would be okay on my own.
Maybe you could buy them a few books or refer them to some diabetes-related websites. Hang out with them and show them just what you go through at each meal (checking blood sugar, taking insulin, counting carbs, etc). Or maybe you could be completely honest and say something like "you need to trust that I can do this on my own". Prove to them you're capable, but try to remind yourself that they are just trying to keep you safe :)
I have hyperventilated a couple times, cried excessively, and passed out because I couldn't shoot up my insulin. The first time I tested my own blood sugar after getting out of the hospital I passed out at the site of the blood. I won't let others see me do anything related to my D-care. I guess I am still embarrassed about it all. You are very brave asking others to help with that. On another note, Lantus burns me also when I inject, but when I inject in the full part of my bottom it isn't too bad. I am at the point now where I have to kind of do a 1,2,3 hold my breath and then stick kind of routine. If somebody saw me do it they would probably bust out laughing. Sadly I cannot get a pump because I don't have insurance. One day I will, but for now I have to inject the old fashion way. Thank you for your kindness I really appreciate it.
[quote user="Sarah"]
If you decide to talk to your family, could you include something along the lines of: "Because of the complexity of managing type 1, there will be times where my BG's aren't in range. It's impossible with the medical tools that exist today to keep the same control as a real pancreas does. However, my endocrinologist is very happy with my control given the tools we have (if this is true, lol). However, when other people give me advice about my diabetes, it makes me feel bad because I feel like it's a judgment about my knowledge and control, even though I'm working so hard. And stress actually can make my BG's worse."
[/quote]
OMG SARAH!!
LOOOOOVVVE THIS! I'm thinking about making it my FB post. LOL
I have a feeling this link will be your best friend: http://behavioraldiabetesinstitute.org/resources-diabetes-information-publications-etiquettecard.html
It has a link to a PDF of their "Diabetes Etiquette for people who don't have diabetes" and it's pretty amazing. It puts almost all our annoyances in quick little blurbs for the fam/friends to read, and it'd probably be a handy tool to give the parents when you decide to have that talk to them. It'll also show them you're not alone in thinking those things.
For your family- The suggestion to read a book is great. "Think Like a Pancreas" by Gary Scheiner is a good choice. Also Richard posted recently that Gary Scheiner is now offering online classes for $30 at http://www.type1university.com/ May help you and your family.
For you- There are spring type devices that will inject a shot for you. They're great because you don't have to see the needle go in. And they allow you to inject with your non-dominant hand, so you have more site options.
http://www.amazon.com/Bd-Automatic-Injector-Inject-ease-Packages/dp/B001IKKHGS
You noted that you don't have health insurance. You can still look into getting it. Contrary to how the media often portrays it, a pre-existing condition does not automatically mean you cannot get health insurance. It often just means that there is a waiting period of 12-18mos before the insurance will cover your diabetes. To me, this means the sooner you can get on an insurance plan, the better, as if you are going to be paying for your D care out of pocket anyway, you might as well be 'doing the time' until your insurance kicks in. Here is just one link that explains this http://www.medhealthinsurance.com/preexisting-conditions.htm
*Obviously, I totally get that it may be financially difficult, if not impossible, to afford health insurance AND D-care out of pocket. Neither is cheap. And your D-care needs to be the priority. *
That may be one area to ask for your parents help, to help you find an insurance policy that is affordable and maybe they could help pay for the premiums during the waiting period for the pre-existing condition if they really think you need insurance. Just a thought. (Also remember that other catastrophic health events can still happen, so I agree that insurance is extremely important even if you aren't the easiest to insure.)
When I was diagnosed at 18 I did not have health insurance either. I did get approved for financial assistance through my hospital. I got 100% coverage for my needles, insulin, test strips. All the basics. But they would not cover anything that you don't really "need". Like they wouldn't cover the pens or any pumps. Anyways, when I turned 19 I married by boyfriend of 5 yrs. I didn't have any problem getting on his health insurance policy. They never even mentioned it being a "pre-existing" condition. I started using pens as soon as coverage took place and then a couple months later I started pump therapy. I am with Anthem Blue Cross Blue Shield. Haven't had any problems with them. At first, they only wanted to cover the Minimed pump, not the OmniPod. I wanted the OmniPod though and after my doctors filled out the medical papers for it and I filed an appeal, Anthem was more than happy to cooperate with me on getting my pump. I paid about $600 (co-pay) for the PDM and I pay about $168 every 3 months for the pods. Out of pocket (without insurance) I think the starter package for the OmniPod is around $1,600. This would include your PDM and 3 or 4 month supply of pods. It would of course be best to have insurance, but do remember the OmniPod people WANT to sell these things. I am pretty sure they will work with you. I think they have a financial assistance program for those who don't have insurance.
I'm really torn on input here. First, as a diabetic, I remember being supremely annoyed when family members would feel the need to give me advice, "Shouldn't you eat now?" "Is your blood sugar okay?" and my personal favorite, "I read in the paper they are close to a cure." I'm sure I sounded annoyed enough that they eventually realized I was capable of managing the issue myself. However, now that I'm a mom of two 20-something daughters, I understand the maternal instinct NEVER goes away. You always worry about your children and want to help them because you love them. Mine don't have diabetes so I annoy them with advice on other things. Just be kind in your responses and remember their intentions are directed out of love. And I totally agree that you should educate them as much as possible. This way they will see that you know what you're doing, which will help them to limit their input and also make them feel more secure that you'll be fine.
Try getting your family aware of type one diabetes. I'm lucky (well...unlucky because that means I got it..) to have family that knows what diabetes is and how hard it is sometimes but at school everyone is completley clueless. So I do diabetes awareness programs for my grade for them to know about it. It totally works! Hope this helps.
Thank you again everybody. I have recently talked to my grandmother about how to address the rest of the family. She is kind of the (forgive the Star Wars reference) Yoda of the family, and she gave me some helpful advice. She is coming to visit next week and said if she noticed the behavior in question she would softly remind the rest of the family (in a loving manner) that I am an adult, I have T1D they don't, and I live with it 24/7, and they have only had one class...I have had several classes with my doctor every three months since March 2010. I am not trying to use her to confront them for me, but at the same time I know that the rest of my family will at least respect what she has to say, rather than ignore me entirely. Again, thank you every one!