Still Here, Still Type 1, Still Amazed, Still Trying to Explain

It's been a very, very long time since I've been on this site. I was diagnosed with Type 1 in the spring of 2010. Almost 4 years later, at the age of 46, going through the all the things that aging women go through, I have some perspective now on this condition.

  1. Although treatment continues to improve and studies are funded, it is still not very well understood.
  2. This lack of understanding makes your health an ongoing experiment.
  3. Tangled with things like aging, and what is astoundingly termed in the medical community as an "emerging field" - i.e. women's health, lack of understanding about how you feel, how DIFFERENT you feel from before diagnosis, increases exponentially.
  4. The law classifies you as having a disability because this is a serious and chronic condition. When you have to provide evidence that you can no longer zip around as you used to at work (the part where you have to face that you are both aging AND diabetic AND a woman AND your life IS impacted by the state of your health, PERIOD), and you need to slow down, some doctors for some reason think they can help you back to what you were before so they don't have to characterize you as someone who actually has NO HOPE of being cured at the current time. And therefore must modify your life to adjust accordingly so that your situation doesn't deteriorate as rapidly as it might otherwise, given that what you used to carry on your shoulders now feels impossible to move forward, backward, left or right.
  5. In sum, the fact that I have to constantly explain to people and justify that I am not normal anymore, that I will NEVER be normal under these conditions, that it's a BURDEN to try to aspire to a state of health that I cannot possibly achieve... this has become so incredibly depressing and wearying. There are times, truly, that I feel too tired to fight. But I have children, and that gives me a reason to keep going, no matter how stressful it is to tell people that you ARE sick even though you look good to them (because you make an effort to fit in and cheer yourself up by looking as good as you can).

Really, really tired.

Hi Cap: I definitely scaled back my life after my Type 1 diabetes diagnosis. Well, okay, I did do my first triathlon after I was diagnosed, but I had something to prove, but I am done with proving anything. All the things that we have to do to stay as healthy as possible take time, a lot of time. For instance, cooking good meals takes time. With work, it's better for our health to not work too much, not stress too much. I am with you!

I'm glad to see you back, but sorry to hear of your struggles. I think that often the time after we get diagnosed is a time of a "sprint" to try to do all the stuff to "take care of it." But diabetes is a marathon, it is relentless, and it is pervasive. Being able to come to terms with things, make adjustments and compromises can be difficult. But diabetes doesn't define you, you are a person. And your happiness and success in life isn't determined by your diabetes. Sometimes, we just need to grab the good things in our lives despite our diabetes. I hope you can do that too.

Maybe this is a good example of how LADA T1 is fundamentally different than T1-diagnosed-as-a-kid?

I am also 46... but have been T1 since I was a kid and would never try to place my mental health relative to when a "cure" might be, because I know by now that no cure is around the corner. T1 has always been my normal. All these young kid doctors who tell me a cure is around the corner? Oh, man, have I heard that before, these kid doctors don't really believe that do they?

I have had my ups and downs over the years. Sometimes pretty bad.

Ms. caprifoglio, I'd like to assure you that you can be happy and productive in this new normal. That while you might sometimes feel down that there will be ups.

I'm with you, too, cap. It'll be five years for me in October, and most of the time I feel as if I will never get it right. Luckily, menopause hasn't been too terribly difficult (other than the ill-timed hot flashes)... but I still grieve spontaneity.

Agree, too, with the ridiculousness of women's health being an "emerging field" -- more precisely, what the medical community chooses to focus upon. A petition was recently promoted on this site, calling on the FDA to include diabetes on its list of conditions worthy of their investigative time and effort; I was livid because "female sexual dysfunction" was included but not diabetes. So far as I know, no one dies from female sexual dysfunction...

Melitta - thanks for this. That is definitely how I feel, after almost 4 years now - I am done with proving anything. And yes, in order to maintain our condition and prevent it from worsening, the things we do in order to keep that in place take time. So appreciate your response - sometimes having this condition makes you feel so incredibly alone. It's not good for your spirit to have to keep insisting that you're not making what you are going through up.

Brian - that is so true. That is what I have to explain to people - it's not like taking a pill for a headache. It's an ongoing up and down struggle on so many levels, physical and psychological. In the meantime I have slowly been getting used to knowing when I am well enough to make the best use of my time. The part that is hardest for me though, is trying to fit in with "the normals" and be taken seriously for my condition. I don't want pity, I don't expect understanding (no one can understand this stuff except fellow diabetics), I just want acceptance and toleration. And peace from negative vibes that have no basis. On top of everything else I have to deal with, on my own, fitting in with the "healthy" community is the hardest thing of all.

Tim, thank you so much for this response. Yes, I am often measured against my image as a healthy person in the communities I am in. "So when are you going to be able to do this again, like you used to?" Like I am going through a phase and pretending and/or wanting to "get away" with something. I mean, would anyone in their right mind ASK for a physical condition like this? It's really hard. Just writing about this makes me upset. But I am glad that I have a community here who understands. Otherwise I would have no one to turn to at all.

Muragaki, thank you for this response, really glad to know that I am not alone.

Wow, diabetes can kill you. It's not on the list. Men AND women have it. It impacts women differently than it does men (as does everything past a general point).

Has there been any response to that idiotic FDA list yet? I need to get more activist and join up with groups aggressively advocating on behalf our our condition, now that the reality of it has fully sunk it and I can speak more intelligently about living with it. Let me know if you have any tips about that... it's now or never, you know? More voices, more strength.

I agree with you, Tim. My 10 year diaversary is coming up, i was dxd at age 8, and indeed, Type 1 has been my normal for over half of my life now. i do what every other teen does, just with a few more thoughts than others (drinking into coma is not a good idea with T1 i think), but other than that i do not feel disabled or less worth than others. i dont care what the law says, the important stuff is all going on in my head, that is what counts. i have set my mind on having to deal with this the rest of my life, this is my normal life, and im gonna live it to the fullest.
and when a cure turns up, all the better!!
i see D as a challenge that is teaching me a lot, and im looking forward to what my little bud is coming up with next… (or not, depending on what it is ;)

swisschocolate - that is good. keep at it. Enjoy your youth - that is a strength when you have this condition.

I am 46. I have had two children. I am in the throes of perimenopause. This is a very different situation than when you are younger. I was 41 when I was diagnosed. Within almost 4 years, I have slowed down considerably. I am in pain almost every day and very sensitive to insulin and everything else that comes along - sickness, change in weather, hormonal swings, you name it. It is hard to get people to accept that you will never have the same biology and all that it comes with again. This is an added downer- that OTHERS can't just deal with it and let you take care of yourself. It is hard.

People in this country have a problem with aging (USA). To be aged before your time in how you live your life? Impossible for them to ponder. They DON'T want to believe it.

If i hurt you in any ways by this response, i am sorry. I just wanted to give another point of view. And i do hope for you, that you can get back on track and enjoy your life to the fullest again, with problems or without...

I have to endorse pretty much everything that has been said here. It is a marathon, it does consume incredible amounts of time, and for certain no one who doesn't walk in these shoes can possibly comprehend the reality. And one more yes: it is indeed my normal and it isn't ever going away, so I had **** well do my utmost to integrate it into my life, get on cordial terms with it, and seize and cherish the good moments that life provides.

As for the FDA . . . I can't even talk about those folks without getting vitriolic. So I won't.

The petition, which was posted at change.org, appears to have been delivered to the following:

Dr. Margaret Hamburg
Commissioner, US Food and Drug Administration

Kathleen Sebelius
Secretary, Department of Health and Human Services

U.S. House of Representatives

U.S. Senate

The site does not provide the date of delivery nor information as to its status, although my money says it landed on the pile that also holds minimum wage and national debt increase proposals...

Advocacy -- check. Activism -- check. Time -- whoops, please hold while I stick, calculate, shoot, correct, correct the correction.

The absolute worst thing about Type 1 is the misinformation, whether people
(a) mistake it for Type 2 (which EVERYONE knows is the individual's fault because they ate too much sugar or won't lose weight),
(b) believe adults can't be Type 1 because it's a juvenile disease (apparently, juvenile Type 1s don't grow into adult Type 1s),
(c) Type 1 diagnosis as an adult is IMPOSSIBLE because (see (b)),
(d) how hard can it be when you don't LOOK sick (Deafness is another invisible disability that folks just can't grasp)

and I could go on.

But I hear tell that Melitta is scheming a project -- I hope to meet her in San Francisco next month and get a better idea!

No no - you didn't hurt me! :) I just wanted to say that it is wonderful that you are young, and you don't let it get in your way. It might be different when you get older, but please enjoy your health as it is right now.

I won't ever enjoy my life in the way that I did before I got sick, but trying to adapt and do the best I can under the conditions is all I aim to do. What I am so frustrated about is that it is hard to get others to believe what you are going through, take it seriously, and deal with it in a way that gives you some dignity. We still have such a long way to go with that.

I am going to do something about this, thanks, Muragaki. And let me in on schemes. I may not be able to travel up to SF (I'm in LA and have a lot on my plate), but I can be supportive and heard in other ways. Keep me posted please...

We need to really organize. That's the only way. Thinking about this actively...

I agree, I think this is probably a big difference between T1-as-a-kid and T1-as-an-adult.

I've had Type 1 since I was 9 and I'm now 32. I don't like to think that Type 1 has scaled back or altered my life in any negative way. Maybe "normal" people do feel healthier than I do, but I have nothing to compare the way I feel to the way they feel. I just try to live my life to the fullest, and most of the time people around me have no idea I'm fighting a blood sugar war 24/7.

I've also pretty much given up on a cure. It takes way too much emotional energy, and diabetes already uses up enough of that.

As to the OP, I can't help with many of these issues, but I wish you the best of luck!

"mistake it for Type 2 (which EVERYONE knows is the individual's fault because they ate too much sugar or won't lose weight)"

If we want compassion and understanding, shouldn't we provide the same respect to people with T2? Maybe that line was tongue in cheek, but it's still an ugly shot.

The scientific data is pretty sketchy regarding what causes T2. There is a clear genetic component, and the weight gain and food cravings may just as well be a result of the metabolic problems as opposed to the cause. Additionally, the poor medical treatment type 2s receive plays a role as well.

Diabetes is tough to manage, but try managing it while taking oral meds in addition to insulin while your PCP is telling you that you should only use 2-3 test strips a day. I'm late onset T1 as well, and frankly I was almost giddy when I got my T1 diagnosis (and by then I was already on basal/bolus insulin). As a T2 I could walk into a Drs office with 3 weeks worth of data with me testing 10+ times a day and writing down everything, and doctors would ignore every word I said. My body was producing virtually no insulin, and the doctor was telling me to get off the insulin and try a combination of T2 meds.

Yeah that is the worst - not having an accurate diagnosis. Just goes to show how much still needs to be learned about this condition, in all its manifestations.

ARGH.