Share Therapy

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1

This was originally posted to my blog, Diabetes Odyssey.

I’m hoping to get some involvement from the audience on this post. I’ve found that about half the diabetics I know have no qualms about discussing ‘personal’ diabetic information, and the other half act as if sharing their current A1c number is tantamount to sharing their social security number!

I can understand both sides here. When I was younger I would never have dreamed of telling anyone anything about my diabetic side. It was all private, shameful, taboo for me. Since I’ve been an active member of the diabetes community I’ve found freedom and relief in sharing. And most of all I’ve found that I am more like other diabetics than I ever thought.

I am not alone!

Below is a list of simple but potentially sensitive questions about your diabetes. If you would like to participate in my little online share therapy session then feel free to post your answers in the comment section.

You do not have to answer every single question if you find one too private, or not applicable to your type of diabetes, or you just don’t know the answer.

Warning: Be aware that your answers will be open for the whole world to see. Anyone who happens by and reads this thread will see all the posted comments.

My answers will be posted in the comments along with everyone’s.

1.Type of diabetes you have
2.Your current A1c
3.Current ISF (insulin sensitivity factor)
4.Current I:C (insulin to carb ratio)
5.How long have you been diabetic?
6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes?
7.Are you the only diabetic in your family?
8.Is your close family supportive, educated on diabetes, and involved in your care?
9.Do you have any other chronic/autoimmune illnesses besides diabetes?
10.What bothers you the most about being diabetic?
11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes?
12.At what number do you usually start to feel high? Low?

What I am hoping to accomplish here is to show other diabetics who may feel shameful, angry, or insecure about their diabetes that we are all similar, and there is nothing shameful about being diabetic or struggling with it!

We are not alone!

2 Likes
2
  1. Type 1
  2. 7.4
  3. 1:15
  4. 1:10
  5. 28 years
  6. Yes, she is a very good doctor who is very sensitive to emotion as well as physical/medical.
  7. No, there are 6 type 1 and a few type 2
  8. Yes, my husband is all in with me!
  9. Yes, I have PCOS
  10. I think mostly it is the perceived loss of freedom. Although I know differently, sometimes I just feel trapped.
  11. I would hold them and let them know they are not alone, they have help, support, and understanding. Life isn’t over, it’s just changed a bit.
  12. No matter what my number is I. ALWAYS. FEEL. HIGH! I usually start to feel low at around 50
4
  1. 2
  2. 5.9
  3. Varies by time of day
  4. Varies by time of day
  5. How long have you been diabetic? 21 years
  6. Difficult to say but probably not
  7. Yes
  8. Yes
  9. No
  10. The time it takes, and the expense
  11. First with empathy. Then when they were ready to listen, with encouragement and support.
  12. I never ever feel high. Low begins at around 50 or so.
5
  1. Type 1
  2. 6.6
  3. 1:90
  4. 1:18, dinner 1:16
  5. 55 years
  6. Not really, he listens & offers suggestions
  7. Yes
  8. No
  9. No just the usual associated with advancing years
  10. BG Roller coaster
  11. It’s not the end of the world, look at me after all these years I still enjoy life & it never stopped me doing anything.
  12. High 200 Low 50
6

1.Type of diabetes you have
Type I

2.Your current A1c
6.2%

3.Current ISF (insulin sensitivity factor)
1:50

4.Current I:C (insulin to carb ratio)
1:4 midnight-noon, 1:6 noon-midnight

5.How long have you been diabetic?
32 years

6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes?
As well as anyone without diabetes can. Tries to be empathetic.

7.Are you the only diabetic in your family?
Yes.

8.Is your close family supportive, educated on diabetes, and involved in your care?
I live alone. My greater family relationship is supportive but does not understand the fine points of diabetes, something that is completely understandable to me. My dog gets it!

9.Do you have any other chronic/autoimmune illnesses besides diabetes?
Hypothyroidsim.

10.What bothers you the most about being diabetic?
The ignorance of many doctors, nurses, dietitians, and those who should be better informed. The ignorance and nuisance created by pharmacy benefit managers when it comes to paying for medicines and supplies I need to live well with diabetes. They often make life harder, not easier.

11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes?
I would tell them I understand their sadness, fear, anger, and sense of loss. I would also tell them that many of us live happy, long, and healthy lives with diabetes. I would counsel them that knowledge is power and that they are not alone.

12.At what number do you usually start to feel high? Low?
I start to feel high at about 180 mg/dl (10 mmol/L) and low at about 65 mh/dl (3.7 mmol/L).

1 Like
7

1.Type 2 but my endo has started coding me as ICD-10 E10.8 T1 with unspecified complications
2.My last A1c as 5.5%
3. First thing in the morning 1:5 to 1:10. Later in the day 1:20 to 1:30
4. Not generally meaningful. Maybe 1:5. I count protein
5. At least a decade
6. My endo is quite empathetic and she actually considers herself diabetes as she has self diagnosed herself as pre-diabetic
7. My brother, father, uncle and grandmother at least
8. Not so much, that is why TuDiabetes is so important to me
9. Sleep apnea, polycythemia vera, kidney stones
10. Not feeling in control
11. I would go give them a hug and tell them that it was all going to be ok
12. I feel low below 70 mg/dl or when dropping fast. I tend to feel high symptoms at 200 mg/dl

8
  1. type 1 / LADA
  2. 5.5 most recently
  3. approx 1:30
  4. varies widely throughout day and with source of carbohydrates
  5. diagnosed 4 years ago, in hindsight believe had symptoms for years prior
    6)I believe my doctor is extraordinarily knowldgable and informed, but no doesn’t know what it’s like even though he has immediate t1 family members.
  6. yes
  7. not as much as I’d have thought they would be, not even close to be honest
  8. diagnosed with “colitis suggestive of ulcerative colitis” based on biopsy results but non-symptomatic generally
  9. never get a day off… Hard to be spontaneous like I envisioned living the rest of my life
    11). I’d listen. Then try to be an example myself to show them it’s nowhere near the end of the world.
  10. I’d say 58-140 but it varies… Based on my meter which I believe reads a bit lower than it should
9
  1. Type 1
  2. 6.9
  3. 1.5 mmol/L daytime; 3.0 mmol/L overnight (at the moment)
  4. 1:6 in the morning; 1:8 the rest of the day (at the moment)
  5. 24 years
  6. Since my endocrinologist has Type 1, most definitely
  7. No one else in my family has Type 1 or Type 2
  8. Very supportive, but not knowledgeable about about pumps nor involved in my care
  9. Severe visual impairment, Graves’ disease, asthma, severe food and environmental allergies
  10. The constant (mental) work of making adjustments to keep BG in line and never, ever getting a break
  11. I would tell them that I cried when I was diagnosed, too; I would let them know I’m here to help or provide resources if they want them; I’d tell them that things will get easier eventually and that, although diabetes is life-changing and difficult at times, it’s still possible to do everything they previously did and enjoyed
  12. I usually feel high at 17 mmol/L or above and don’t feel low until I’m in the high 2s mmol/L
10

1.Type of diabetes you have
Type I

2.Your current A1c
5.6%

3.Current ISF (insulin sensitivity factor)
1:50

4.Current I:C (insulin to carb ratio)
1:8-1:10

5.How long have you been diabetic?
35 years

6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes?

I think he understands the medical piece, but is pretty clueless about the day to day management, stress and fears.

7.Are you the only diabetic in your family?
No, my dad died from the disease at age 40. My niece and nephew both have type 1.

8.Is your close family supportive, educated on diabetes, and involved in your care?

My wife understands, but isn’t involved in the management Which is fine by me.

9.Do you have any other chronic/autoimmune illnesses besides diabetes?
No

10.What bothers you the most about being diabetic?

The fear of becoming a burden.

11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes?

Be thankful you were diagnosis in 2016. The education and technology is so much better now. If you manage the disease the odds are you will live a long life and die of something other than something related to diabetes.

12.At what number do you usually start to feel high? Low?
Low 70 High probably in the 200’s.

11

GG 1 T2
2 5.6 no meds
3. ?
4 ?
5 7 years
6
7 yes
8 yes

9 no

10 not much
11 just listen

High ? Low 70’s

12

1.Type 1
2. 6.1
3.1:50
4. 1:6 before noon, 1:10 after
5.18 years
6.Definitely not. My insurance doesn’t cover any endocrinologists within 2 hours of me so I go to a PA for my proscriptions. I’m probably her only T1 patient, but as long as I get my prescriptions refilled I’ll be fine. (at least until I get a pump)
7.I’m the only type 1. My dad, my aunt, and 2 uncles on my dad’s side have type 2.
8. I was diagnosed at 5 years old, so for the first 8 years or so they did practically everything. I took over all my care when I got into high school, but my family still supports me.
9. nope!
10.The quality of care you get is directly related to how much money you make or how good your insurance is. I don’t have a CGM or pump simply because I can’t afford one! I feel like I’m stuck in the past.
11. Honestly I’m not sure, I suck at emotional things. I’d probably try to reassure them that their life isn’t ruined and that I’d always be around for advice.
12. High 200, Low 70

2 Likes
13

1.Type of diabetes you have: type 1
2.Your current A1c: 5.6
3.Current ISF (insulin sensitivity factor): no idea
4.Current I:C (insulin to carb ratio): no idea
5.How long have you been diabetic?: 32 years
6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes?: I see a nurse who is supportive and lets me get on with it… I low carb so she doesn’t ask too much. My GP who writes my prescription has no idea and doesn’t understand why I test my sugars so much (8-12 times a day)
7.Are you the only diabetic in your family?: yep
8.Is your close family supportive, educated on diabetes, and involved in your care?: my husband is amazing, knows when to help and when to step back… We all have bad days!
9.Do you have any other chronic/autoimmune illnesses besides diabetes?: no
10.What bothers you the most about being diabetic?: I wish people would stop telling me a cure will be here in the next 5 years or so (including my mother!) I was told that 32 years ago, but I still have a stupid number of injections a day, I still test my bloodsugars- yes the meter is not the size of a brick and doesn’t take minutes, and I’m still on a restricted diet. Personally I have seen few changes… It still messes with my head!
11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes?: pull yourself together… It’s fine. There will be hard days, really crappy days, and days were you think actually this has helped me become this amazingly strong person who can deal with the crazy ups and downs in life, but you can’t ignore it. It’s here to stay. You can’t let it defeat you for too long. (Hours, a few days at most) It’s complications are way too cruel.
12.At what number do you usually start to feel high? Low? Low: 3.5. High: 8.0

14

V1.Type of diabetes you have
Type 2
2.Your current A1c
6.7
3.Current ISF (insulin sensitivity factor)
Unknown
4.Current I:C (insulin to carb ratio)
Unknown
5.How long have you been diabetic?
23 years
6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes?
She is very understanding
7.Are you the only diabetic in your family?
Yes
8.Is your close family supportive, educated on diabetes, and involved in your care?
They know about things,not always supportive.
9.Do you have any other chronic/autoimmune illnesses besides diabetes?
Visually impaired, non diabetes related
10.What bothers you the most about being diabetic?
Weight loss difficulties
11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes?
Life goes on, you will learn how to take care of yourself. Find support and exercise is so important…
12.At what number do you usually start to feel high? Low?
High- no feeling
Low-60’s

15

1.Type of diabetes you have: Type 1

2.Your current A1c: 5.3

3.Current ISF (insulin sensitivity factor): 1:50

4.Current I:C (insulin to carb ratio): 1:10

5.How long have you been diabetic? 40 years

6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes? I do not expect or rely on my doctor to provide any assistance regarding my D management or any emotional support. I’ve been making all dosing, etc decisions on my own almost all my D life. On broader medical issues, the doctor seems to be knowledgeable enough.

7.Are you the only diabetic in your family? Yes.

8.Is your close family supportive, educated on diabetes, and involved in your care? Very supportive and well educated (by me :wink:), not really involved, but I am pretty sure my wife would step in if need be.

9.Do you have any other chronic/autoimmune illnesses besides diabetes? No.

10.What bothers you the most about being diabetic? Higher degree of uncertainty compared to a non-D person. It’s just more likely that at some point I will run out of luck and my D may become a burden to my family.

11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes? Difficult question; depends on who the person is, we are all very different.

12.At what number do you usually start to feel high? Low? I generally do not feel well >150, lows 60-65

16
  1. Type 2
  2. 7.1
  3. ?
  4. ?
  5. 1 yr, 3 months on metformin, started testing blood once a day a week ago
  6. She also s o has diabetes
  7. No, my sister who is 59 has had type since her 20s (it is not well managed), my dad got type 2 in his 60s.
  8. My sister refuses to help, says she goes to weight watchers to learn how to eat. She has money, her husband owned a big dairy farm, he died and left her with a huge life ins policy.
  9. I bipolar and the side affects can cause diabetes
  10. Would lo e to have a piece of pie on occasion.
  11. It isn’t t g e end of the world’m d, you just need to educate yourself and adapt a different eating and lifestyle.
  12. Don’t know. Only started testing my blood a week ago.
17
  1. Type 1
  2. no recent A1c, around 9% long ago
  3. 1:55
  4. 1:6 1:8 1:12
  5. 32 years?
  6. N/A. Previous endo, absolutely not.
  7. Uncles, aunts, cousins, grandparents have diabetes.
  8. Very supportive, as much as I let them.
  9. None.
  10. It’s self managed. A problem with my mind and less so with my pancreas. That I seem to lack the competency manage it.
  11. Panic, try not to cry myself, shrug. Then plagiarize no. 11 from this discussion.
  12. I’m not very sensitive to highs, I think think it has more to do with the time I spend high vs how high. Lows as early as 90 but probably 50, Altogether very inconsistent.
1 Like
18

1.Type of diabetes you have: Type 1

2.Your current A1c: 6.8

3.Current ISF (insulin sensitivity factor): 1:50

4.Current I:C (insulin to carb ratio): 1:9 before noon, 1:15 after

5.How long have you been diabetic? 49 years

6.Do you think your endocrinologist (or whatever doctor cares for
your diabetes) truly understands what it’s like to live with diabetes? no, but he’s very kind

7.Are you the only diabetic in your family? Yes, well only one w T1D

8.Is your close family supportive, educated on diabetes, and involved in your care - my husband is very supportive

9.Do you have any other chronic/autoimmune illnesses besides diabetes? glaucoma

10.What bothers you the most about being diabetic? the volatility, unpredictability, and fear I will be a burden

11.How would you respond to someone who was crying because they’ve
just been diagnosed with diabetes? Join the community on TuDiabetes, and then I’d give them a hug

12.At what number do you usually start to feel high? Low? High > 180 Low < 75

19

1.Type of diabetes you have: T1
2.Your current A1c: 6.1
3.Current ISF (insulin sensitivity factor): 45
4.Current I:C (insulin to carb ratio): 1:11
5.How long have you been diabetic? 32 years
6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes? not at all, although she is quite kind
7.Are you the only diabetic in your family? yes
8.Is your close family supportive, educated on diabetes, and involved in your care? absolutely yes
9.Do you have any other chronic/autoimmune illnesses besides diabetes? no, not yet
10.What bothers you the most about being diabetic? the fear of complications as well as the fear of causing a burden on my loved ones
11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes? it’s going to be ok…join us at Tudiabetes
12.At what number do you usually start to feel high? Low? high: 160ish low: 70ish

20

1.Type of diabetes you have
Type 2
2.Your current A1c
6.8
3.Current ISF (insulin sensitivity factor)
10
4.Current I:C (insulin to carb ratio)
1:4
5.How long have you been diabetic?
near 25 years…not sure
6.Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes?
I don’t think any non-D person truly understands
7.Are you the only diabetic in your family?
No, uncle , brothers, mother
8.Is your close family supportive, educated on diabetes, and involved in your care?
Supportive- Yes, Educated-slightly, Involved-I keep things to myself
9.Do you have any other chronic/autoimmune illnesses besides diabetes?
Autoimmune-no. Other chronic-yes
10.What bothers you the most about being diabetic?
The permanence of being diabetic.
11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes?
I’m not very good with words but I am a good hugger
12.At what number do you usually start to feel high? Low?
High =220, Low= 60ish

1 Like
22

. Type of diabetes you have: Type 1 (LADA)
2. Your current A1c: 6.5, approx.
3. Current ISF (insulin sensitivity factor): 1:100
4. Current I:C (insulin to carb ratio): 1:10
5 .How long have you been diabetic? 22 years @ 5 months
6. Do you think your endocrinologist (or whatever doctor cares for your diabetes) truly understands what it’s like to live with diabetes? He’s very empathetic.
7. Are you the only diabetic in your family? My close relatives have autoimmune genes, so who really knows?
8. Is your close family supportive, educated on diabetes, and involved in your care? I provide my own care, but my close family is educated and supportive.
9. Do you have any other chronic/autoimmune illnesses besides diabetes? Four others: celiac, hypothyroidism, pernicious anemia, and juvenile rheumatoid arthritis (RA in remission and replaced by other stuff such as osteoarthritis and lumbar spinal stenosis).
10.What bothers you the most about being diabetic? Big nuisance disease. H-u-g-e…
11.How would you respond to someone who was crying because they’ve just been diagnosed with diabetes? I’d give a little gentle advice and definitely mention Tudiabetes…
12.At what number do you usually start to feel high? Low? I feel “off” when my blood glucose starts rising or falling, although I often can’t tell which direction it’s trending. It would be nice to have a CGM.