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Viral Facebook Post Shows How Dangerous Mistaking Chronic Illness for Drug Abuse Can Be

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Chronic health conditions aren’t always visible, and many people who live with invisible illnesses have experienced others’ skepticism, or even just confusion, about their disease. After witnessing how a stranger was treated while experiencing a health crisis, one woman is calling for more compassion.

In a viral Facebook post originally written last June and shared on the Facebook page Love What Matters on Friday, Natalie Thompson said she was driving down the road when she saw a man slumped over in his car at a stop sign. She pulled over and called 911, telling the operator that the man was vomiting, convulsing, unconscious but breathing and that she didn’t see any signs of drug use. (Editor’s note: The Mighty was unable to reach the man, and is excluding any details that may identify him.)

“I’m on the phone with 911, directing traffic around this guy’s truck coming off the exit and people are stopping at the intersection to take pictures of him and asking me if it’s from heroin. All I’m saying is ‘MOVE! You’re blocking traffic and not helping AT ALL!'” Thompson wrote.

According to Thompson, a police officer arrived first and immediately said the man was overdosing. Then, when the ambulance arrived, she said paramedics were able to wake the man and ask him if he had taken any drugs or alcohol. When he said no, she said they asked, “Well, why are you sweating so bad? What happened?”

It turns out the man had diabetes. Thompson said the police continued searching his car and the man was taken by ambulance. The reason she shared this story, she told The Mighty, was because as she was on the phone with 911, it seemed like the only concern people had was if the man had overdosed and getting a photo of him. Not everyone who appears to be unconscious is experiencing an overdose, and even if they are, they still deserve respect and compassionate care.

Hearing the police officer say that the man was experiencing an overdose so quickly after arriving at the scene was also scary for Thompson because she has epilepsy.

“I just felt like people needed a reminder that we shouldn’t react to a situation based on what we think we know, and even if our first (and sometimes worst) suspicions are correct, who cares? It should make zero difference why the man needed help. None at all,” Thompson said. “Everyone makes mistakes but to condemn someone else based on your personal opinions is callous, obnoxious, and self-righteous. Whoever cast the first stone right?”

After her original post went viral, Thompson said she’s been getting tons of comments, messages and personal stories from readers, some of which have moved her to tears. Since she wasn’t able to meet the man, she hopes he or someone close to him might comment on her post, but hasn’t heard anything yet. She said she hopes he’s doing well.

I’m not in [the medical or law enforcement] field and I have no idea of whether or not [the situation] was handled properly, but honestly, to err is human,” Thompson said. “Those that commented were thankful for the reminder that you can’t always judge a book by its cover. That was my hope and my only intention.”

Read the original post here:

Thinkstock photo by MattGush

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The Connection Between Diabetes and Depression We Have to Talk About

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Depression: another big D word and largely silent, invisible illness. Standing alone it can be emotionally devastating and incredibly difficult to cope with. Add diabetes, and depression is often given further means to fester and grow quite dramatically, with stable blood sugar control often overlooked or given less attention than it needs to have. Most recent studies show that depression is twice more commonly found in individuals that have diabetes than those without.

But why? And how do we address it? Uncontrolled diabetes can be problematic enough to treat, especially with many health practitioners not addressing the emotional roots of the diagnosis at all. With depression thrown into the mix the proactive approach a person with diabetes needs to take can fall easily by the wayside, with self-care becoming a burden. Of course, such despondency can often be a part of someone experiencing diabetes with an eating disorder as well. Depression, diabetes and an eating disorder make up a dangerous mix whereby each condition can be fueled by the others, maintaining a cycle that is difficult to break out of.

Despite the high numbers of people with diabetes who also experience depression, any information available upon diagnosis is sorely lacking. You are typically given all the education that you need in relation to what insulin to take, what to do in cases of hypo or hyperglycaemia and which snacks are better than others, but what about the emotional issues? It seems quite rare that any insight or support is provided to acknowledge what coping with diabetes can do to your head.

Undoubtedly the realization that type-one-diabetes is an incurable, unrelenting illness which will be with you for life can be difficult to accept at diagnosis. Then there’s the possible perceived alienation from peers, the confusing and unanswerable question of “Why me?” the loneliness and isolation of it all. Furthermore, that urge to be free and able to do everything your friends can do without having to stop and test your blood/inject/eat every few hours. Such yearning may lead to a sense of denial and rejection of acceptance: what blind-sighted health professionals can term “non-compliance.” It can also be hugely challenging to deal with the influence of mixed media messages that can spread ignorance to the public and the barrage of unhelpful, intrusive comments that may come from the people around you. Nobody seems to tell you about any of this in the beginning.

Of course, this isn’t always the case, some people do have good accounts of the process, where the right resources are offered and they feel supported. However, for every success story, there seems to be several other cases whereby a newly diagnosed person with diabetes is given a few leaflets, a clinic appointment in four months, and is then sent on their way.

As one site says: “Everyone reacts differently when they hear the news that they have diabetes. You may be initially overwhelmed, shocked, afraid, angry and anxious. Some people go through a stage very similar to mourning – as though they are grieving for lost health.”

Diabetes can also become a tool for self-harm, with suicidal behaviors complicating the issue even further. As well as the highly dangerous practice of omitting or reducing insulin which can be largely associated with an eating disorder, someone struggling with depression may misuse their medication in other harmful ways. Depression can jump on diabetes as a way of pushing the boundaries of life to a desperate and potentially lethal knife edge.

Patience Blystone spoke of how at the height of her illness, depression provided her with yet another tool to hurt herself with: “Along with my eating disorder being shown through poor diabetes control, my depression has done the same… Whether it’s me screaming out for help or to be noticed, punishing myself because I feel I deserve that, or just neglect because I can’t muster the energy to take care of my body.”

Talking about how she is now able to manage her depression more appropriately through an on-going process of recovery, Patience said: “I’ve coped with it by finding out what makes me depressed. I am a huge perfectionist, have terrible anxiety and in general am very pessimistic towards my own life. By realizing that setbacks won’t ruin my life or make people dislike me, I’ve managed to always feel the need to be perfect. I can tell myself ‘Well if this goes wrong I have these alternatives’ and move on. My anxiety is a daily battle of tiny bouts of courage, tears, yoga, and just pushing past my comfort zone. And the being negative is just a day by day thing. I find if I enjoy the small things and try not to focus on the hard problems for too long it lessens.”

Lucy O’Meara also believes that diabetes has played a role in the development of her depression. She talks of how the condition “majorly decreases (her) motivation which makes relapsing more likely and diabetes control go out the window.” Kayleigh Lovell, who was diagnosed with both type-one-diabetes at the age of 6, believes her own severe depression started gathering roots at the same age. “I find basic tasks like brushing my teeth or getting dressed almost impossible, so taking care of my health is difficult. My eating disorder, OCD and depression have always prevented me from making my health a priority.” she says.

This is not to say that advances in treatment settings are not happening. Recent years have seen the link between psychology and diabetes being considered a lot more has been previously seen. Reports on the association of disordered eating have played a small part in this. Most significantly the National Institute of Clinical Excellence (NICE) released new guidelines which outline the importance of psychological support for children and young people with diabetes. They also updated their existing recommendations concerning this area in relation to adults.

But we need to continue making a noise.  Progress is being made in ripples, but we need a crashing wave. If you are reading this and struggling with depression, please speak out and don’t be afraid.  There is nothing whatsoever to be ashamed of.  Vocalize your distress, shout about it if you must. Go to your GP, diabetic nurse, consultant or even a friend who can advocate on your behalf because you shouldn’t have to suffer alone. Nobody should have to suffer alone or in silence. You deserve to be heard.

This piece originally appeared on the website for charity Diabetics With Eating Disorders (DWED).

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Thinkstock photo via Marjan_Apostolovic

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Thank You to the Man Who Chose to Love a Diabetic Woman

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Living with a chronic illness is no easy task. Each day we wake up knowing we will face the same challenges we faced yesterday and will continue to face these challenges until a cure is found. We gain strength through this because we cannot choose to take a day off from our illness.

Many times, it is hard for the chronically ill to recognize their strength. For us, it’s not about waking up and being strong. For us, it’s just about doing what we need to do to make it until tomorrow. Where we do see strength, though, is in the people who choose to love us, despite how debilitating our illness may get. These are the true heroes. Thank you.

 

Thank you for taking the time to learn about my disease. You have spent your time researching my symptoms, my complications, my risks. You have read thoroughly about all of the things that can happen to me with this illness, about all of the things I cannot do, but you still stand by my side. You have done your research that allows for me to live more comfortably, knowing that if something goes wrong, you’ve read about it, and know what to do to help.

Thank you for allowing me to talk about dark issues. While I hope to live a long and healthy life, I know how fast things can do downhill with my disease. You engage in conversations no 25-year-old should have to talk about. You have listened to my grave and funeral wishes. Yet, you continue to love me as if I’ll be here forever.

Thank you for doing everything in your power to let me live my abnormal life normally. You have graciously taken some of the burdens of my disease, and have rested it upon your own shoulders. Without you, I wouldn’t be able to accomplish all I have been able to while facing the challenges I face. You will never comprehend the amount of gratitude I have that you are willing to stand on the sidelines of races with a bag full of glucose tablets and diabetic supplies so I can run in races like everyone else.

Thank you for being there to remind me I can make it through another day. Even though my illness is chronic, and I have been living with it for almost 18 years, I will never get used to having to inject myself 10+ times each day just to stay alive. You are there to support me when my life comes crumbling down in the moments I realize I’m different, and there’s nothing I can do to rid me of this disease. You have not judged me in the moments I wanted so badly to give up.

Thank you for putting on your brave face when things go wrong. You have held my hand through sickness, seizures and nights in the ICU. You have watched me collapse to the floor when I’m hit with a sudden low. You have watched my body turn against itself and poison itself when my body struggles to filter out the sugar in my blood. You have been there when the doctors have talked about my chances in this life, and you have not faltered.

Thank you for giving me your whole heart, knowing all the love in the world might not be enough to save me. You have willingly embarked on a lifelong journey with me, disregarding the fact that my life may not be long. You have selflessly stepped your foot into my world as a chronically ill person, and you have made the choice to stay.

Thank you to everyone out there who has made the choice to love a person with a chronic illness. Thank you, especially, to Jared, for doing all of the above and more.

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Thinkstock photo via altrendo images.

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Why I Am Wary of Online Support Groups

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The thing I most like about The Mighty is that it is a sharing of experiences, hopes and what we have learned along the way. But beware, not all online “support groups” are like this!

Over the last two and half years I have joined about five different types of support groups for diabetes and for various dietary approaches. A couple of these were Facebook groups, others worked on different platforms.

There is lots of information and expertise available in these groups that can be and was very helpful. But this comes at a cost. Despite the hard work of administrators, things can go wrong. I joined most of these just after my chronic illness was diagnosed. I was absolutely desperate for support and understanding. But this isn’t what happened!

 

From my experiences I have decided that the negatives are greater than the positives. I don’t think I will ever join a support group again. I have become very wary.

Chronic illness can often bring depression and certainly there is some grief and sadness when you are first diagnosed. This means you are much more emotionally vulnerable and can be deeply affected by thoughtless remarks. Groups that are open have every sort of person in them from the kind and compassionate listeners to the just plain nasty, egocentric and vicious person. You can be damaged. This happens in closed groups too.

Because people are not communicating with people they actually know, and it isn’t face to face, respondents take liberties. There seems to be a perceived freedom to be rude and discourteous. I have seen these so-called “supportive” group members telling a person they are an “idiot” or a “fool” or you get a “WTF” response. How is denigrating someone being supportive?

When I joined these groups I was seeking help, support, knowledge and encouragement. In one of them, for diabetes, I learned a great deal from some longer-term and older members. It was quite a happy and positive experience. I was new to diabetes and this was a good way to build my understanding. Then out of the blue came a nasty message. Afterwards the person apologized because they sent it to me and it was meant for someone else! Well, it shouldn’t have been sent to anyone! This sent me into a tailspin. Was the support worth the possibility of someone else sending me a vile accusation in an email message? No, it wasn’t.

You actually need to be emotionally strong and resilient to belong to some of these groups. I got lectured about using a microwave in another group! Well, I come from a science background. I understand how microwaves work and in fact they provide better nutritional outcomes than boiling food. Everyone is entitled to an opinion but, because I am just an unknown on Facebook, I can get a diatribe spewed at me. I know I can report it but the damage has already been done. Do I want to read through such opinion and sarcasm? No, I don’t. Does it make me feel down? Yes, it does!

I have diabetes and was told in a ketogenic group that it’s not OK to consume sugar despite you a having a hypo! This is totally ignorant. So sometimes, the comments border on irresponsible. During a hypo, which can occur out of the blue, I do need glucose. People in these groups comment as if they are the fount of all knowledge and this can be damn dangerous.

I believe it is wrong to give advice to people and even worse to do so to people whom you do not know. These “support groups” seem to attract people who see themselves as “experts” and guardians of the “one true way.” They do not tolerate deviation and the comments can cause your confidence in your own understanding of your illness and how your own body works to plummet. I actually have enough on my plate to deal with so I don’t need the negativity that has been sent my way.

Cyberbullying is prevalent on the internet. Being connected to people you don’t really know is really quite superficial. The bullies can operate anonymously. It allows inhibitions and the normal social protocols to be abandoned. This sort of bullying or harassment behavior can have drastic effects on me.

Then there’s the judgement that comes from the experts in the group. Being judged leaves me feeling like I am not worthy, not good enough. I don’t need this in my life.

I work hard to maintain resilience. For me, it is important to be able to bounce back. To do this I try to eliminate stress, use mindfulness strategies and look after myself by eating properly, getting sufficient sleep, exercising as best I can and by getting spiritual nourishment. Getting a derogatory or negative blast from a “supportive group member” totally undermines resilience.

Some research indicates that depression can increase with increased use of social media. Other research indicates just the opposite. I know for me, the negative impact of my experiences has made me really wary. I have health issues from chronic illness that I deal with on a daily basis and it isn’t always easy. I don’t need to add to my feelings of inadequacy or frustration or even anger by participating in these groups any more.

So I am “unfollowing” them because they are not meeting my needs for help and support. I need to be wary of joining any in the future. I am so glad I found the Mighty. I find so much encouragement from the articles I read. I have never read a negative comment either.

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Thinkstock photo via Getty Images.

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Why I Only Tell Those Closest to Me When I'm Not 'OK'

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I have learned that when an acquaintance, some family members or even a friend asks me how I am, they don’t really want to hear my answer. So I answer with “I’m fine” or more simply “OK.”

An explanation of the reality is not want people really want to hear. They often want to just get on to the really important stuff in the conversation. They don’t want to really hear about my reality.

I have thought about the reasons for this. I have come up with a few possibilities:

1. They’ve heard it all before and don’t want to hear it again.

2. They are impatient and want to get to the fun part of conversations.

3. They don’t really care.

4. They only ask as a polite conversation convention.

5. They think I go on and on about being ill.

6. You look OK; thus, you are OK.

7. They think you are exaggerating, and maybe enjoying being ill!

8. They are not prepared to give you the time needed to explain.

9. They don’t accept that I have a chronic condition that is always present.

10.  They are really just too busy to listen.

So, I have found it easier to just act as if I’m OK – that I can breathe, converse and keep up with them. But the truth is I can’t.

I get very, very short of breath. I get fatigued and this is very different to being tired. Some days I can’t really have a long conversation because I don’t have enough breath. I have to check on my physical well-being several times a day. I have to be careful what I eat. I have to make sure I drink enough water. I have to make sure I carry a whole handbag worth of stuff: my puffers and a spacer, a copy of my asthma plan, my glucose tablets, my glucose meter and test strips, jelly beans and snacks, wipes to clean my hands for a blood glucose test and a water bottle.

If I start to get a headache and the shakes, I need to stop whatever I am doing and check things out. Same if my vision gets blurry or I suddenly start to feel nauseous. I have to make sure I eat at regular time intervals. I have to make sure I don’t try to do too much. That is hard! I have always pushed myself, but I cannot afford to be that person any more. If the air is smokey, dusty or there are fumes, I will start coughing and have to leave. Even very strong perfume can be a trigger.

I have to be prepared. My non-ill friends do not need to do this. If I go out and the one-hour outing turns into three or four hours, I can be in trouble. After three or four hours I will be getting so tired that I really should be lying down. I can be so tired that I should not drive.

But, I say I am “OK” rather than explaining everything I have to do and everything I need to keep track of every day. I don’t have the energy either to go through the details over and over. With people closer to me, like my husband, I do actually explain how my breathing is, how my diabetes is.

I start each day with measuring my peak flow and oxygen saturation and what my glucose levels are. I don’t just say, “I am OK.” I try to be open and real. Sometimes, I just want to forget all about it! But I can’t. Some days, I really don’t want to talk about it either. But my husband needs to know. He needs to know so he can understand what I can and cannot do each day. Do I need a very quiet day, can I go to the shops with him, etc. He also needs to know when the situation changes during the day.

So, “OK” is what I choose to say. I don’t want to be seen as the illness either. If I am “OK” I will be treated as if I am OK too. There are only a few people who get a real answer.

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Thinkstock photo via natalie_board.

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The Emotional Price of Gathering Data on My Diabetes

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So, my new continuous glucose monitor (CGM) had been sitting in the box it was shipped in since around Thanksgiving.

Beginning to wear it now is not a New Year’s Resolution, or an effort to game my diabetes data gathering to avoid the high carb temptation that bombards us during the holiday season. No, it’s not that simple. I’m not going gently into that CGM-inspired good night.

Nor do I have a simple answer for why I’ve waited so long to use a CGM, and why I’ve waited so long to start to wear it since it arrived. In this case, the answers aren’t simple. They’re also not pretty.

I can give you reasons why I’ve resisted so long. Worries about having to carry the receiver in my already overloaded pockets (no, I don’t have an iPhone, and until an iPhone carries a price less than a few hundred dollars more than a comparable phone, I’ll stick with my Android platform – which means I have to carry the receiver, too). Concerns about using up already valuable real estate by having both an insulin pump and a CGM inserted into my body at the same time.

Any concerns I might have had about appearances, I lost long ago. When it comes to looks, I care a lot more about my clothes than about my devices. So how it looks doesn’t affect me.

Wearing an insulin pump was an easy process for me. No problems getting started or staying with it, and nearly seven years later, I’m a proud insulin pump user. What’s the issue anyway?

I don’t know, but it’s troubling. I know that something is definitely bothering me about this. I can tell by the way I delayed getting started, until the reasons for my delay were outweighed by the embarrassment that I have access to a device that many crave and cannot get their hands on. I must go forward.

Yet, when I did my first insertion, I was using language that would make a sailor blush. I got even more surly as that first insertion didn’t work, because my brand new transmitter was crap from the start. Now I’ve used two transmitters and two (actually three, after working with technical support to get everything right) sensors with nothing to show for them. Finally, on the fourth try, I got it to start up and calibrate properly. But my issues, I fear, go deeper than a sensor insertion.

I think my problem may be the notion, the confirmation, that a CGM gives you data 24 hours a day, seven days a week. In other words, it’s a constant reminder that I live with diabetes, a fact I try to forget every day.

Yet, there’s no question. I must begin my CGM journey. As The Great Spousal Unit shared, and she was right: sometimes, I don’t want to believe what my numbers are without a glucose check. If I’m going to be such a slave to data (and you have to be one if you live with diabetes), sometimes I need data I can access even quicker than a BG check.

But it’s not easy, and I’m not entirely sure why. The trick right now, I think, is to make the physical effort to get started, and then over time, work on what my brain and my heart are trying to tell me.

I recently read a statistic sharing that adults living with diabetes are at least three times more likely to develop depression than other adults living in America. Depression isn’t exactly what I’m feeling. Still, I already know I have diabetes all day, every day… why do I have to wear something additional so I can be reminded of that? All day, every day?

Ultimately, I need to remember that this is a device that could save my life. And over time, I may actually get used to wearing it. I’ll know I’ve turned the corner when my desire to get the data overwhelms the desire to rip it off of my body for good.

Until then, the emotional price of data gathering seems awfully high.

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