Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
These specialists would have to be very well educated in many chronic illnesses along with neurochemistry and behavior, but it would be helpful to have someone who understands the immediate and long term effects of a condition on behavior and how to help improve any undesired behaviors / moods in ways besides / along with controlling your illness.
I am considering seeing someone simply because of my immunocompromised status and Covid-19. People keep wanting me to go to dinners with 30 plus people crammed into their kitchen, ballparks with people sitting shoulder to shoulder, and the like. The immunocompromised still have to be very careful and people need to respect my condition. I still don’t let people into my house as I don’t have a very large house and these people are going out galivanting everywhere and I just don’t need it or want it.
Elysse: I don’t see you as the one needing help here. Just state what you said above and politely but firmly decline any unsuitable invitation. WE understand and get you even if people outside our community do not.
It’s very frustrating! After Covid came to town, one of my coworkers asked how it would affect me. I told her it’s not unlike the flu season when people come to the office coughing and feverish. They’ll recover but if I get it, it will throw my whole system out of whack and possibly dangerously so. I am very thankful that I can work remotely.
How am I supposed to form an opinion without experience of what it might involve/be? I’d want a lot more context or specification of situation before expressing an opinion.
I would have found it helpful over the years to visit with someone who is part mental health professional and part life coach who specializes in T1D. Implementing the advice of T1D doctors can be quite complex and having a professional who could help address the thoughts/emotions around building the habits related to living with a chronic illness could be so helpful! Having an experienced partner would be a huge asset especially in the first years after diagnosis.
I answered other because it was unclear whether this was for me specifically or for anyone generally. I currently do not need anyone. But I can’t see why the right person (very important to anyone needing mental health assistance – one size does NOT fit all) wouldn’t be helpful in someone’s time of need.
Many of us have seen a slew of T1D doctors, perhaps even so much so that we are the ones who hold the doctorate. A doctorate hard earned from the college of hard knocks.
Mental heath experts, whom I had little need for when younger, may play an increasingly important role as I age and as predicted amnesia and dementia rear their ugly heads. Ugh! Is dementia a mental health issue? Dr. Google is a bit ambiguous on answers.
Yes! 🙂 our pediatric endo referred us to a psychotherapist that specialized in adolescents with chronic illnesses, spherically diabetes. My son met with her a few months after diagnosis and off and on for 2 years. I believe it was helpful for him.
I personally don’t feel the need to see a mental health specialist, but I am sure that a specialist could help people struggling with diabetes or any other chronic condition.
I could have used a therapist when my partner was Dx’d bipolar1, with anger mgt issues. I seemed to be the trigger for the manic episodes (my mere existence was all it would take). I tried to get some counseling in order to learn what to expect (as best as possible with BP1), coping mechanisms etc. I failed the screening – I don’t have suicidal nor homicidal ideations so the health plan said “nope”. Meanwhile I am also dealing with T1D (for 40 years). I don’t necessarily think that a therapist has to specialize in chronic conditions, but knowing that people like us not only deal with everyday life – and occasionally need some guidance – we are doing that while dealing with T1D. We are like Ginger Rogers – doing all the same wonderful dances as Fred Astaire – but backwards in high heels.
I do know when I need help so that my family and friends do not suffer, after having heart surgery, with teeenage daughters stressing me, when my
Husband died. I feel I am doing well because I did use a mental health professional
I’ve managed my Type 1 for 30 years, I’m 75, seeing an excellent endocrinologist for most of that time. I’ve come to terms with most of the issues and stayed relatively healthy. Why change that now?
At this point in time, I’m not in need of an MHP. Overall, it would be beneficial for those who are struggling with issues related to chronic illness. Everyone handles things differently, and many have more than one chronic condition.
I put Other. I’m in a pretty good place and reasonably satisfied with my life. But I do think it would be interesting to get an outsiders point of view in light various medical issues.
As a pre-teen and teenager it would have made a tremendous , positive difference. At 75, after 67 years living with T1 and complications, peer support is more helpful.
This is critically important and should start as soon as you are diagnosed. Diagnosed 52 years ago at 12 I did fine but at various stages of my life I began to suffer severe depression I thought was genetic. It actually was caused by diabetes and I finally found the right doctor that confirmed it is common the longer you have it and the older we get. Sheesh…!
It may have helped when I was first diagnosed, as a kid, wondering “why me?!?” Now, over 45 years later – not sure why or how a mental health professional could be of any help in terms of having a ‘chronic illness’…. Like many on the list, it’s part of our lives and we keep plodding along doing the best we can with what we’ve got.
In terms of assisting me in dealing with other challenges life presents – with the stresses they can bring (potentially impacting one’s diabetic control), then a MHP could possibly be helpful.
In an ideal world, it would be helpful, but the odds of the professional actually understanding my situation are slim, as are the odds that someone employed by my HMO would be able to help me navigate the gaslighting and stigma from the doctors from the same HMO.
The last shrink my HMO assigned who supposedly specialized in chronic illness told the diabetes support group that she understood what it was like to have diabetes because she often must drive behind other cars on the beltline and wait in line at the grocery. Thankfully, she has moved on to counseling cancer patients, although I pity them.
I answered a little helpful. I saw a psychologist for part of the 1990’s when my children were 10 or older and I was working full time, tending 5 acres as well. I needed the perspective, and it was helpful.
Therapy has certainly helped, along the way. I’ve been learning this disease for almost 70 years, and can almost break it down into stages when another set of eyes and ears might have been crucial to understanding how best to see one’s self as a diabetic. I think it has a lot to do with developing a philosophy with the crayons provided, and that happens over time, with all sorts of twists and turns in the path. Sharing knowledge strengthens some beliefs, and points out others which aren’t helpful. A therapist who helped me most was the one who championed an ability to adjust, swerve, and not give up. She also believed that “everyone has something” makes it easier to do what’s required, knowing that it is NOT a personal failing. It’s sometimes exhausting to be a diabetic, but I love the days when I meet the challenge and come out smiling.
There were times in my life when it would have been very helpful. I struggled and found my way through other means, a health group I found online, where I also received some individual help with a naturopath. T1D was treated as a whole body and mind experience. Everyone with T1D should have access to some form of mental healthcare related to the chronic challenges of living daily with the disease. How it could be delivered effectively would need to vary to fit individual needs.
I saw a therapist for about a year when I was having marital issues. (20 years ago.) It helped a lot, mostly just having someone to listen to me without obvious judgement. Didn’t talk much about the diabetes, but she did finally treat what was obviously (to everyone but me) depression. Worked well. We’ll be celebrating our 50 year anniversary next Spring. And happily, I might add.
There was a time when I was so frustrated and feeling lost because everything I tried in order to stay in control did not work. And at point I could have used some counseling to deal with it.
I have seen 12 mental health professionals in the last 11 years and for the most part their lack of knowledge and understanding has been… detrimental. Only one had a clue regarding T1D; most brushed my T1D aside altogether, and one psychiatrist actually chastised me for causing myself to develop type 1 diabetes. I tried to correct her but she told me she knew what she was talking about because she had a relative with Type 1.
Generally whenever I wanted to talk about the way diabetes impacted me, they seemed determined to redirect to conversations about my relationships with other people. I’m not sure whether this was simply because they felt more comfortable talking about these topics or if they felt that I was using diabetes as a scapegoat for my relationship problems but things just went around in circles and I didn’t get the help I needed for a long long time.
So yes I think it’s very important for people with T1D to have access to mental health professionals who specialise in chronic illness-related issues.
I answered “a little helpful” because for me, I don’t feel a need for mental health counseling related to my diabetes. I have in the past though, and it did help quite a bit. So, for those who need it, it is, in my opinion, very helpful!
I chose “little helpful”. The problem with chronic illness or caregivers of diabetics, there is little available time to sit with a counselor. Caregivers and those with chronic illness need the access to care that improves their condition or provides low-cost equipment/solutions/caregivers to manage their condition. Cost of medical equipment and the barriers to finding in-home care is sad
These specialists would have to be very well educated in many chronic illnesses along with neurochemistry and behavior, but it would be helpful to have someone who understands the immediate and long term effects of a condition on behavior and how to help improve any undesired behaviors / moods in ways besides / along with controlling your illness.
very well put!!!
I am considering seeing someone simply because of my immunocompromised status and Covid-19. People keep wanting me to go to dinners with 30 plus people crammed into their kitchen, ballparks with people sitting shoulder to shoulder, and the like. The immunocompromised still have to be very careful and people need to respect my condition. I still don’t let people into my house as I don’t have a very large house and these people are going out galivanting everywhere and I just don’t need it or want it.
Elysse: I don’t see you as the one needing help here. Just state what you said above and politely but firmly decline any unsuitable invitation. WE understand and get you even if people outside our community do not.
I just want to let you know that I am doing the same thing as you. Hang in there. You are not alone.
It’s very frustrating! After Covid came to town, one of my coworkers asked how it would affect me. I told her it’s not unlike the flu season when people come to the office coughing and feverish. They’ll recover but if I get it, it will throw my whole system out of whack and possibly dangerously so. I am very thankful that I can work remotely.
I would say that when is the important question. At 13 It would have been life altering perhaps but 61 years later not so much.
How am I supposed to form an opinion without experience of what it might involve/be? I’d want a lot more context or specification of situation before expressing an opinion.
I would have found it helpful over the years to visit with someone who is part mental health professional and part life coach who specializes in T1D. Implementing the advice of T1D doctors can be quite complex and having a professional who could help address the thoughts/emotions around building the habits related to living with a chronic illness could be so helpful! Having an experienced partner would be a huge asset especially in the first years after diagnosis.
I think it would be very helpful however the cost could be prohibitive with all the other T1D expenses
I answered other because it was unclear whether this was for me specifically or for anyone generally. I currently do not need anyone. But I can’t see why the right person (very important to anyone needing mental health assistance – one size does NOT fit all) wouldn’t be helpful in someone’s time of need.
Over the decades, I do wish there had been counseling available from someone who understands T1 diabetes.
Many of us have seen a slew of T1D doctors, perhaps even so much so that we are the ones who hold the doctorate. A doctorate hard earned from the college of hard knocks.
Mental heath experts, whom I had little need for when younger, may play an increasingly important role as I age and as predicted amnesia and dementia rear their ugly heads. Ugh! Is dementia a mental health issue? Dr. Google is a bit ambiguous on answers.
Dementia is diagnosed by Neuropsychologists… but, it seems to sit in both mental health and body health categories, doesn’t it?! Oy.
I agree with many comments below. Does such a T1d mental health specialist exist?
Yes! 🙂 our pediatric endo referred us to a psychotherapist that specialized in adolescents with chronic illnesses, spherically diabetes. My son met with her a few months after diagnosis and off and on for 2 years. I believe it was helpful for him.
Yes. The BDI (Behavioral Diabetes Institute) has some wonderful mental health doctors. And at least one of them has T1D, too.
I personally don’t feel the need to see a mental health specialist, but I am sure that a specialist could help people struggling with diabetes or any other chronic condition.
I could have used a therapist when my partner was Dx’d bipolar1, with anger mgt issues. I seemed to be the trigger for the manic episodes (my mere existence was all it would take). I tried to get some counseling in order to learn what to expect (as best as possible with BP1), coping mechanisms etc. I failed the screening – I don’t have suicidal nor homicidal ideations so the health plan said “nope”. Meanwhile I am also dealing with T1D (for 40 years). I don’t necessarily think that a therapist has to specialize in chronic conditions, but knowing that people like us not only deal with everyday life – and occasionally need some guidance – we are doing that while dealing with T1D. We are like Ginger Rogers – doing all the same wonderful dances as Fred Astaire – but backwards in high heels.
I’ve heard that Ginger Rogers quote before and it never dawned on me that it’s very much us!
I do know when I need help so that my family and friends do not suffer, after having heart surgery, with teeenage daughters stressing me, when my
Husband died. I feel I am doing well because I did use a mental health professional
I’d be satisfied if I could meet an endo that really understood the disease and all its other things!
I’ve managed my Type 1 for 30 years, I’m 75, seeing an excellent endocrinologist for most of that time. I’ve come to terms with most of the issues and stayed relatively healthy. Why change that now?
At this point in time, I’m not in need of an MHP. Overall, it would be beneficial for those who are struggling with issues related to chronic illness. Everyone handles things differently, and many have more than one chronic condition.
I put Other. I’m in a pretty good place and reasonably satisfied with my life. But I do think it would be interesting to get an outsiders point of view in light various medical issues.
As a pre-teen and teenager it would have made a tremendous , positive difference. At 75, after 67 years living with T1 and complications, peer support is more helpful.
I am 90 now and started at age 21, so I am glad not having to deal with those younger years!!
This is critically important and should start as soon as you are diagnosed. Diagnosed 52 years ago at 12 I did fine but at various stages of my life I began to suffer severe depression I thought was genetic. It actually was caused by diabetes and I finally found the right doctor that confirmed it is common the longer you have it and the older we get. Sheesh…!
Very helpful at time of diagnosis. Also, in later years, it would be helpful in dealing with complications as they come up.
It may have helped when I was first diagnosed, as a kid, wondering “why me?!?” Now, over 45 years later – not sure why or how a mental health professional could be of any help in terms of having a ‘chronic illness’…. Like many on the list, it’s part of our lives and we keep plodding along doing the best we can with what we’ve got.
In terms of assisting me in dealing with other challenges life presents – with the stresses they can bring (potentially impacting one’s diabetic control), then a MHP could possibly be helpful.
In an ideal world, it would be helpful, but the odds of the professional actually understanding my situation are slim, as are the odds that someone employed by my HMO would be able to help me navigate the gaslighting and stigma from the doctors from the same HMO.
The last shrink my HMO assigned who supposedly specialized in chronic illness told the diabetes support group that she understood what it was like to have diabetes because she often must drive behind other cars on the beltline and wait in line at the grocery. Thankfully, she has moved on to counseling cancer patients, although I pity them.
I answered a little helpful. I saw a psychologist for part of the 1990’s when my children were 10 or older and I was working full time, tending 5 acres as well. I needed the perspective, and it was helpful.
Therapy has certainly helped, along the way. I’ve been learning this disease for almost 70 years, and can almost break it down into stages when another set of eyes and ears might have been crucial to understanding how best to see one’s self as a diabetic. I think it has a lot to do with developing a philosophy with the crayons provided, and that happens over time, with all sorts of twists and turns in the path. Sharing knowledge strengthens some beliefs, and points out others which aren’t helpful. A therapist who helped me most was the one who championed an ability to adjust, swerve, and not give up. She also believed that “everyone has something” makes it easier to do what’s required, knowing that it is NOT a personal failing. It’s sometimes exhausting to be a diabetic, but I love the days when I meet the challenge and come out smiling.
There were times in my life when it would have been very helpful. I struggled and found my way through other means, a health group I found online, where I also received some individual help with a naturopath. T1D was treated as a whole body and mind experience. Everyone with T1D should have access to some form of mental healthcare related to the chronic challenges of living daily with the disease. How it could be delivered effectively would need to vary to fit individual needs.
I saw a therapist for about a year when I was having marital issues. (20 years ago.) It helped a lot, mostly just having someone to listen to me without obvious judgement. Didn’t talk much about the diabetes, but she did finally treat what was obviously (to everyone but me) depression. Worked well. We’ll be celebrating our 50 year anniversary next Spring. And happily, I might add.
Joan–Congratulations and best wishes.
There was a time when I was so frustrated and feeling lost because everything I tried in order to stay in control did not work. And at point I could have used some counseling to deal with it.
I have seen 12 mental health professionals in the last 11 years and for the most part their lack of knowledge and understanding has been… detrimental. Only one had a clue regarding T1D; most brushed my T1D aside altogether, and one psychiatrist actually chastised me for causing myself to develop type 1 diabetes. I tried to correct her but she told me she knew what she was talking about because she had a relative with Type 1.
Generally whenever I wanted to talk about the way diabetes impacted me, they seemed determined to redirect to conversations about my relationships with other people. I’m not sure whether this was simply because they felt more comfortable talking about these topics or if they felt that I was using diabetes as a scapegoat for my relationship problems but things just went around in circles and I didn’t get the help I needed for a long long time.
So yes I think it’s very important for people with T1D to have access to mental health professionals who specialise in chronic illness-related issues.
I answered “a little helpful” because for me, I don’t feel a need for mental health counseling related to my diabetes. I have in the past though, and it did help quite a bit. So, for those who need it, it is, in my opinion, very helpful!
I chose “little helpful”. The problem with chronic illness or caregivers of diabetics, there is little available time to sit with a counselor. Caregivers and those with chronic illness need the access to care that improves their condition or provides low-cost equipment/solutions/caregivers to manage their condition. Cost of medical equipment and the barriers to finding in-home care is sad