Thursday, July 31, 2014

Results: The Emotional Impact of Wearing an Insulin Pump.

A week ago, I asked those of you who wear one to tell me what you wish someone had told you about how insulin pumping affects you emotionally, and the responses were just as diverse, thorough, and sometimes surprising as I'd hoped they would be. Thank you, everyone!

Sifting through all of the responses, I noticed some common themes.

If you're thinking of trying an insulin pump, you might want to know that:

You may encounter misconceptions from others.

"I wish someone had warned me that I would [...] get frustrated with people assuming that I don't have to do anything anymore because the pump 'just does it.'" - Rachel

"I think it's a good idea to have a child practice answering 'What is that?' kinds of questions in a confident and concise manner. B. once overheard someone saying (about him) 'I HATE that kid. He thinks he's so great because they let him use an iPod during school.' One of B's friends told the hater it wasn't an iPod, but a medical thing. 'It's for his diabetes!' But since there's not always a nice friend around, some practice would be great!" - Katy

"While I don't think there has been a huge emotional impact on me directly related to wearing my pump, I would say that one thing I didn't consider was that I was making my invisible disease visible. I get a lot more questions about diabetes while wearing a pump than I do when I'm not wearing it or when it is not visible. I don't mind this though, as it is an opportunity to dispel myths and address people's curiosity." - Whiniest

"I always have people ask me what is that. Always seem to happen mid sentence of a conversation. "So we are going to shoot at this loca... what is that?" That can be very jarring and embarrassing if you don't want your diabetes to be announced. Preparing for that eventual discovery can be a good idea. That way your emotions are not shaken and you can have a witty comeback or little speech about what it is." - Jillian

Wearing an external medical device may take some getting used to.

"People should be prepared for the odd feelings - at first - of having something attached to their body ALL THE TIME, and that they will have to accommodate with clothing, etc. The benefits far outweigh this, and I pretty much forget it's there so it doesn't bother me any more, but it did take some getting used to!" - Anonymous

"I don't know about the emotional impact, but learning more about the practicality issues being attached to something 24/7 would have been helpful. (E.G - sleeping, how to wear dresses or clothes without pockets, intimacy, swimming, etc.)." - Jen

"The frustration of having to plan out your wardrobe for the week based off where your infusion set is. Also, being told how to spot a leak would be good." - Anonymous

"I'm not sure the emotional side of pump-wearing is different from any method of tight control. However, I do hate the weight & bulk, constantly shifting it according to an activity, and catching loose tubing on doorknobs, etc. OK, on second thought, there IS more stress. If it didn't provide more flexibility adjusting insulin to activity & better control in conjunction with CGM (also another stressor), I would return to the pen in a heartbeat." - Cat

"I've gone through pump hiatuses that are a direct result of just being burned out and frustrated with
the process of changing my infusion sites. The ordeal of having to switch sites, even when I don't want to, and sometimes hitting bad spots or wondering if it will hit a nerve or muscle (shudder)... I've taken breaks because it got to the point where I just couldn't do it anymore." - Mike H.

"I wish someone had warned me that I would be constantly concerned about my pump coming detached from me." - Rachel

You need to give it time.

"I would to tell someone considering a pump to know about the how difficult it can be to be patient and wait for the changes to kick in before saying I give up. It's not easy even though this little gizmo attached to us can make life easier sometimes it makes it harder." - Maria

"The pump is not magical. It won't cure all your problems and lower your a1c overnight. It takes work: basal and bolus rate adjusting, and is only as good as the time and effort you've put into programming it. ( that mean?) I think we put such high expectations on a pump, and we get so excited that it'll make our lives all perfect. But it's still us trying to control numbers. Just with a little computer." - Holly

"Things that I would have liked to have known is that you don't have to deal with all of the advanced settings of the pump on Day 1, and some of them not ever, depending on how you choose to manage your life on insulin. I remember when I first went through orientation with the pump, I got really overwhelmed by the information overload and had to say, "Look, can we just set the basal rates and you show me how to do a single bolus and see insulin on board? And turn the alarm off? I'll figure out the rest later." And I did, in my own time, as I needed it. There are still features on my pump today that I don't use, and I've been pumping for... doing math on my fingers... 10 years? Holy cow. Anyway, it is good to know now that I can make the pump fit my diabetes style, and what works for me. And that's okay. Even if it doesn't necessarily take advantage of every feature on the device." - Martin

"Some stuff I had read made the transition seem like a breeze, and while I got to grips with the basics/general attachment thing pretty quickly, I reckon it was at least a full *year* before I really felt comfortable with my little android appendage and began to see what all the fuss was about in terms of improving BGs. Some of those first 12 months were not the easiest and I know I'm not the only one who has been tempted to lob my pump out of the window in the early days." - Mike K.

"I've only been pumping a little over 5 months after 3 yrs on MDI. I wasn't prepared for the lack of

sleep getting my night basals set and adjusting. Fast acting insulin as your basal acts differently than Lantus. It seems to take longer for high numbers to come down with all fast acting (YDMV) my first a1c was no different, [...] but I tend to be a little conservative with insulin because it is a little scary, I used to be afraid of it, now I say I have a healthy respect for it." - Debra

You might experience some "data overload".

"I think what was emotional for me was getting too obsessed about always checking numbers. When using a CGM with the pump, I found I was testing MORE because I wanted to be sure I could really trust it. I guess you eventually move past that." - Rachael

"After almost 20 years of injections I knew what that felt like, but early on with a pump I just had no idea whether this, that or the other thing 'felt right' or what to do about it if things were going a bit off kilter. How aggressively to correct... How long to leave it... When to wait and see... That would have been a lot more difficult if I'd not known it was coming as part of the package." - Mike K.

You might really dislike it - or, it might not bother you at all.

"It's okay to hate your pump some days because the pump clip is such a PIA." - Anonymous

"Less hugs from husband and kids , cause they're afraid of ripping out my site." - Anonymous

"I think it depends on your age. The transition was much easier for me because I was older (48). But... I think any kind of follow up with a new pumper (after a month, two months max), with answers tailored to that individual's circumstances, would be extremely helpful. Wish I had that." - Stephen

"Honestly, I was so excited to be off the 12-15 injections a day I was doing on MDI that my emotions upon getting the pump can be adequately described as 'OHEMGEE THIS IS AWESOOOOOMMMMMEEEEEEEEE!!' After coming off the pump for a few years due to losing my insurance and getting back on it after getting insurance again, my thoughts are still the same." - pavedsilverroads

"I resent when people tell me how I might feel, how I should feel, or how I should behave in response to a change in my life - especially when such things haven't happened yet! The stuff that goes through my head -- nobody knows it better than me, and nobody is qualified to predict how I might feel about a given circumstance. I don't think that emotional counseling, preparation, or whatever should be mandatory. Emotions are a sensitive issue, and if someone wants to discuss them or not discuss them, it should be their own choice, by their own initiation, and on their own terms." - Scott 

"[...] Getting a pump helped me become more open and comfortable with my diabetes." - Laddie

"It's okay to be frustrated with it. Just because it's new and shiny doesn't mean that you have to love it immediately. If you decide it's not for you after giving it a fair shot (and that changes from person to person and doc to doc), it's okay to go back to shots/pens/inhaling/whatever-delivery-method-you-prefer." - Maria

* * * * *

If you have any additional thoughts that weren't covered above - please leave them in the comments!


  1. I wish someone would have told me I would simultaneously feel more beautiful and absolutely hideous on the pump. I frequently go back and forth on the emotions. I was dx at age 22, a few years after finally recovering from an eating disorder, so now I resent the weight gain the pump has given me because it brings back thoughts I wish I didn't have to deal with. But at the same time, I know I am healthy and thriving and that is true beauty.

    1. Thank you for your bravery and honesty - that, in itself, is beautiful.

    2. I was dx t1 at age 19. My eating disorder became severre after dx for about 5 years, but eventually, thank God, I was able to get it under control. I find it fascinating how common it is to see a correlation between t1 diabetes and eating disorders.

  2. Thank you for this post! It's nice to get some honest advice about insulin pumps. I was diagnosed two years ago and I'm still using pens but me and my doctor are considering transitioning to the pump soon. The problem is that I'm afraid I won't be able to adjust and end up leaving such an expensive device on the side. Also, I'm not very good at keeping my bgs under control with thw pens so I don't know how much the pump would actually help me... I was doing really well a month ago but every minor routine change feels like I'm back to square one... sorry about the rant but I'm feeling a little frustrated lately.

    1. Rant away! That's what this space is for.

  3. I just received my pump this past Friday! I have never been on the pump and I am so excited about! Thankyou for all the comments! I am looking forward to not having to do so many MDI's! I am also looking forward to the flexibility and freedom!

  4. 29 years on the pump this month. There are days it is still a pain, and I am limited to my sites. However, if someone would have told me I would still be alive and wearing a pump 29 years ago - I would have laughed at the absurdity at the possibility.

  5. My daughter has been pumping for four years now, and it was overall an easy adjustment for her. She isn’t particularly shy and not at all about diabetes, so the questions didn’t bother her. The most annoying thing for both of us is the assumption that because she’s on the pump, her diabetes is all taken care of and we shouldn’t have issues. And then people look at us like we’re doing something wrong when we’re dealing with lows.

  6. I have officially been on my pump for 6 weeks. I really appreciate that you asked people to explain their experiences. I have been super angry at times, frustrated, in tears, and other times I am like "I have a pump and I'm gunna kick some serious diabetes butt with this sucker." (that doesn't happen as frequently as the anger does at this time) I had to do more research because my Endo didn't explain dual wave or square wave bolus to me, which would have been helpful for me to know. I really feel connected to the above advice, a lot of it hit home with me. Thank you for everyone sharing their stories and Kim, thank you for having an open place where we can feel connected.

  7. Living a life with Type 1 diabetes is not easy. Using a pump is not easy or inexpensive. A pump is not a cure, it is a high profit device for big pharma and big Med. I have had type 1 diabetes for 33 years and never used a pump and have no complications.

    1. I respectfully disagree. Would you say that about a pacemaker or dialysis machine? For many people, life with T1D on a pump is easier while for others it's just different. I love the mantra of this community--your diabetes may vary. I love my pump and have no complications!

  8. It was so nice of you to include what I said! I didn't remember saying that, and didn't recognize it when I read it, and actually thought, "That's a situation I can relate to. This is a really good idea, and there's still time before school starts to practice responding to meanies and questions." Then I saw it was me who said the thing I related to.

    I think this is why I write. It is a good way to stumble along, "Yeah, me too" moments.

    This is a great post, and what a smart idea. The things other people said are helpful to me as well!

  9. I love my pump and have been on it for almost 10 months. I was very scared at first that i would break it or something but it turns out to be easier than i planned. I do get frustrated since I am still in the adjustment of getting my bolus adjusted for different times of the day. Am I the only one who has different setting for different times of day? I wouldnt want to go back to injections for anything...

  10. I've had type I since I was nine, am now 36 and started on a pump six weeks ago. Setting the basal was a slight inconvenience but no big issue, and I would not go back to mdi, ever! My son is six months old and is already noticing me doing my bms, so not having to inject and not having the equipment in the house is a big bonus, safety first! Being able to combo bolus makes a big difference to control and my lows are very much reduced. The downside, people think I'm a nineties throwback with a pager..

  11. I've had type I since I was nine, am now 36 and started on a pump six weeks ago. Setting the basal was a slight inconvenience but no big issue, and I would not go back to mdi, ever! My son is six months old and is already noticing me doing my bms, so not having to inject and not having the equipment in the house is a big bonus, safety first! Being able to combo bolus makes a big difference to control and my lows are very much reduced. The downside, people think I'm a nineties throwback with a pager..

  12. The biggest adjustment for me was cost. While health insurance varies - all my pump supplies are subject to my higher medical deductible - I definitely meet my deductible every year due to these costs - I previously rarely met my deductible. Syringes fell under the prescription portion of my insurance, so the cost shock was amazing to me. The control I get with my pump is worth it, however, I wish it wasn't as costly.
    Professionally, I work in employee benefits, and find that many employees ask me about my pump - either during orientation or just bumping into me in the building. I recommend making sure they are financially prepped for the switch to a pump - I doubt this is something doctors are speaking with their patients about when recommending usage.

  13. Do you have a link to a list of positive things people say about wearing a pump? I'd like to offer both that link and a link to this page to people I work with who are considering pump therapy but are a little on the fence.

    I think many of us worr(y)ied about/experience many of the items on this list and seeing the words written out made the feelings less abstract and more concrete for me.

    Amongst other things, it made me feel less embarrassed about some of the variety of emotions I go through while wearing a pump and this post increased my feeling of normalcy. If other people love their pump but also are annoyed about some things: I must be normal (Lol).

    Thank you, everyone for sharing your experiences!

  14. I hope this new innovative takes off. We need more products to help us manage this disease. However, education is the key to successfully fighting this disease. Review our web site if you need assistance.

  15. I started using an insulin pump very quickly after I was diagnosed. I used syringes and pens for about a year but I really push for a pump. I thought it would be so much more convenient, but sometimes it's the complete opposite. I feel like I do not take care of my diabetes as well on the pump as I did with shots. Sure, it gives me a little more freedom, but it's almost too convenient that I tend to neglect taking boluses.

  16. Thank you so much for this page - and the blog in general, it's going in my bookmarks! I started on the pre-training for getting my insulin pump today (currently have it all attached without any meds in it so I can get used to wearing it), and cannot wait to go live with it. I was diagnosed at age 9 and have been injecting insulin for 19 years now, so learning from the beginning again is as terrifying as it is exciting, but reading genuine reactions and real-life stories is quite soothing and reassuring.

    1. I'm so glad to hear that, Abbey!

    2. you sound exactly like me a month ago! I hope all is still well with the pump!

  17. I'm having my pump for almost five years now and although there are some dificulties (where to leave it when i dont wear jeans with pockets. .) I wish someone would have told me how much more free i would feel. I dont have to think about all the thing i need to take with me, because it is already there. I pack my back for the day and only need my bloodglucose meter and im ready.
    (Sorry, english isn't my native language )

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  19. I wish someone would’ve told me to carry way more supplies than necessary when going away from home, even for one night. I thought one extra infusion set would be good, until I messed up my extra and had to leave my family campout to go home because I had no more extras and no pens with me. Diabetes sucked that day. Stole my time with my family away from me.


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