CMbT Photography is now Novel Photos! Same amazing work... different name.
CMbT Photography is now Novel Photos! Same amazing work... different name.
My tagline for Spotlight on Stigma is "Welcomed but Not Accepted." In many places, the official policy welcomes those with disabilities, mental health issues, and invisible illnesses. But when someone with these issues tries to be included, they find they aren't accepted. Spotlight on Stigma is my small way to help combat that lack of acceptance by bringing awareness to these issues.
As you can tell from the rest of this site, photography and writing have been passions of mine most of my life. It's only been the past few years that I've discovered another passion: speaking out about mental health issues, invisible illnesses, and basically any area of life that has a stigma associated with it.
Not knowing where else to start, in May of 2019, I started a blog I call Spotlight on Stigma. On that blog, I share from my heart about my struggle to overcome the stigma of having several physical and mental health issues while also having close friends and family members with similar issues.
I write about dealing with bipolar, food addiction, having multiple doctors, depression, being very overweight, health, feeling overwhelmed, support groups, anxiety, family issues, infertility, having multiple diagnoses, being judged, PTSD, suicidal thoughts, and a myriad of other similar topics.
If you are facing any of these issues, have loved ones who are, or just want to know more about them...
- Check out my site at www.SpotlightonStigma.com and follow the blog.
- Like and follow my Spotlight on Stigma Facebook page at https://www.facebook.com/spotlightonstigma. Share posts that would encourage others you know.
- Read the articles and thoughts that I have had published in "The Mighty" online magazine and follow me there: https://themighty.com/u/spotlightonstigma/.
- Comment on the posts
- Like and follow my Facebook, The Mighty, and Spotlight on Stigma pages.
Help me lessen the Stigma for those who need an SoS by putting it in the Spotlight.
I'm inviting you my pity party today. I don't have a cake but I can provide some yummy grapes I just bought yesterday - or, even better, cookie dough. I don't plan to decorate with streamers and balloons but since I've been manic lately and did a huge decluttering session, my place is fairly neat. Sorry for the lack of formal, mailed invitations. It's kind of a spur-of-the-moment thing.
Here are the reasons for my party:
1 - I just took my mom to the doctor. Because she has another appointment this afternoon with her primary doc, we got a copy of the labs they did at this specialist. I don't know anything about what the results really mean, but I can read a lab report well enough to know that it's not good. What is probably the issue is a benign tumor on her adrenal gland. Most likely she will need surgery.
2 - My dad's foot isn't getting better. He's a Type 2 Diabetic and has an ulcer on his foot. He was hospitalized for it - to get IV antibiotics and to control his usually mostly uncontrolled blood glucose for awhile. During the hospitalization they realized that his circulation in that leg is blocked - 100% blockage in 2 major veins/arteries (I can't remember which). This basically means that his foot won't heal because there's very little circulation to the bad area. Normally this isn't a big deal because they just do a stint in the veins/arteries that have the blockage and open them up (like heart surgery). But in his case, he has an aneurysm above the area. They go in through the groin to do this so there is a huge danger of blowing the aneurysm with this procedure for him, which is extremely dangerous. However, the home-health nurse came by yesterday and confirmed what we've been thinking - it's not getting better. Most likely he will need surgery.
3 - This past Sunday my daughter had to help move some furniture at her job. Right after that her back was really hurting, but we just thought she strained something. Her ex-step-mom is a physical therapist and put her through a bunch of positions, etc, to see what she thinks it is. Though she couldn't tell for sure, she said that it's probably a big deal and to see not only an orthopedist, but one who specializes in spines. One of the possibilities is that she broke a vertebra. If so, most likely she will need surgery.
4 - My boyfriend didn't get the job that he interviewed for a couple of weeks ago. He and I are both very disappointed. I hurt for him because I know how much he wanted it and I feel he deserved it. (It was with the same company he works for now but a more challenging position, with a raise). But there's nothing I can do to make it better. At least with his issue, he won't need surgery.
5 - It's been a week since I was diagnosed with a major double ear infection. My ears aren't really better but my stomach has been torn up due to the strong antibiotics. Best of both worlds, huh? I've also been in a low cycle, incredibly depressed and over-the top anxious this past week. It's super hot outside, with the heat index values running over 100 I think every day. I can't deal with doing ride-share in those temps... even working in my study is almost unbearable because the air doesn't work correctly and it's usually about 80 during the day in here. Remember that I'm heat-intolerant and I break a sweat even at what most people consider mild temps. So I've been miserable in more ways than one, along with feeling so guilty because I haven't been "productive" this week. I also shouldn't need surgery, but there is the possibility that all of the other people I live with will all need it very soon, possibly all in the same short span of time, like a week or a month.
I'm very sorry, but I've used the little energy I had to write all this down (or most of it, there's more but stuff I don't want to go into right now)... so I'm too tired to have company. I guess I'll have the pity party by myself.
(Now where is that cookie dough?)
I just read an article on "The Mighty", a digital health community created to empower and connect people facing health challenges and disabilities, about the big deal the press is making of Adele recently losing weight. This article so affirmed ideas I have had for years but never thought could actually be true, because society and especially medical personnel, have been saying the opposite.
The article, titled "What to Remember Before Commenting on Adele's Weight Loss" (published mid-December 2019, written by Lexie Manion... https://themighty.com/2019/12/adele-weight-loss-christmas-photos/?utm_source=newsletter_mighty_brief&utm_medium=email&utm_campaign=newsletter_mighty_brief_2019-12-30&$deep_link=true has some amazing thoughts in it. But by far my favorite paragraph is this one:
"For those struggling with eating disorders and disordered eating, celebrating someone's weight loss uninvited can trigger dangerous behaviors in an attempt to lose more weight. Some argue that by uplifting or just allowing fat people to exist we somehow promote obesity, which isn't true, yet no one talks about how we clearly promote self-harm through eating disorders and disordered eating when we carelessly celebrate someone's weight loss and nothing else. It sends a dangerous message to people trying to recover from disordered eating and eating disorders that weight loss of every kind is an accomplishment."
I have been overweight by far the majority of my life - sometimes extremely, sometimes not as much, but I've never been what the charts say is a "healthy weight". Even the times in my life where I worked out every day or was on a strict diet, I never made it to that magic number.
But until very recently, my physical health has been pretty good - and what I've been dealing with health-wise has had no relation at all to my weight (except for Polycystic Ovarian Syndrome - PCOS - which actually could be a cause of my weight issues). Other than that, for years I've dealt with Restless Legs Syndrome and Mitral Valve Prolapse/dysautonomia, and just being a sickly child in general with many, many ear infections, kidney issues, etc as I grew up, plus a myriad of mental health issues.
I just crossed the line from pre-diabetic to having type 2, but it's still controlled by meds so it's really no different other than the terminology. I wasn't diagnosed as a pre-diabetic until just a couple of years ago. My cholesterol was a little bit high at my last check-up - the first time I've had an issue with it at all. My blood pressure has been slightly high the past few years but those years have been beyond stressful so how much of that was weight-related and how much was continuous, ongoing, major stress on top of an anxiety disorder and other mental health issues?
I have two clear memories of the medical field in relation to my weight and this issue - two extremes. One was a time that I knew I had an ear infection (I have had many so I knew what they were like) and I needed to get antibiotics. I had new insurance and hadn't established a primary doctor yet, so I went to one of the few in the area that would take me without being established. He spent the entire visit lecturing me about my weight - and he didn't even look in my ears! That experience to this day makes me nervous about going to a new doctor and experiences like this have also scarred my daughter concerning the same issue.
The other time was just the opposite. I was severely depressed at this time of my life. This doctor mentioned at my visit that my weight was something that we needed to address, but not at that time. He was much more afraid that I would do something to hurt myself with my level of depression and he knew that adding on the stress of dealing with weight loss could send me over the edge. (He was very correct, by the way.) This was the first doctor I ever had who cared more about me than about my weight.
Since then the tide is slowly turning to where doctors don't blame weight for almost every physical problem out there. I have found a few doctors now that care more about me than my weight issue. But both my daughter and I both have dealt with this in the recent past so we know that thinking is still out there.
On a quick side note... for most of my life I would put off going to the doctor about anything, even an ear infection, because they made me weigh at each visit and all it did was throw me into a deep depression. It has taken me years but I am finally at the point where I tell them I don't weigh - and the medical field is starting to listen. I've had to argue with some to get to that point but now I don't let me scale keep me from having other medical issues addressed.
If you are in the same boat as I am about that issue, stand up for yourself. My point always was, if they can tell me a reason they need to have the number, I'll do it. So far no-one ever has. I can understand a child whose amount of medication is affected by his/her weight or a health issue that very directly involves weight gain or loss as a symptom, but not a freakin' ear infection!
Oh - and if they tell you that you don't have to look at the scale but they have to have that dang number, don't fall for it. One time I read over my post-visit notes after they had said that, and saw the number. I got so depressed I was down for weeks - all over that stupid number. Again, know that I've done it for years now and though sometimes I have to argue with them about it, I've always gotten the medical care I needed, even without that number on their charts.
Back to the main issue... I know my eating is a huge problem. I have said it before on this blog that I am to the point where I am terrified I won't ever be able to fix it - and those health and mobility issues that are just now showing up will get much worth over time. But it's truly ridiculous for a doctor to bring it up in an office visit where you went in the first place because you thought you had a virus. Do these doctors not think that we (those of us who are severely overweight) haven't already realized that it's an issue that needs to be addressed?
"The Mighty" author said it so well: "When we assume weight loss is a good thing without the person saying so themselves, we send the message that any lost weight is a win, when in fact, people can lose weight due to stress, illness, eating disorders, taking new medications and a multitude of other things. This also sends a clear message to fat people that it's not OK to be fat, and that they should lose weight to fit in, too."
This happened to my boyfriend, though, because weight isn't a big issue to him, I doubt he even noticed. A couple of years ago he was in and out of hospitals for months, extremely ill, while several teams of doctors tried to figure out what was wrong. He was finally diagnosed with Stills Disease, a rare auto-immune disease similar to rheumatoid arthritis. Throughout the course of that horrible time, he lost about 45 pounds - and he's not a big guy to being with. When he was finally strong enough to be able to get out and do things, a friend of his complimented him on how great he looked.
All I could think about was the absolutely nightmarish way he got there - and how I had begged him to eat and drink during that whole time because he was so weak. It tore me up inside and the one who said it is a big addiction recovery advocate. Maybe he was just trying to think of something positive to say... but I really wish he would have emphasized how great it was that he was out of the hospitals and on the road to getting better. If that same thing had happened to someone who was sensitive to eating issues, it could have spiraled them down to thinking that it was better to lose weight, no matter how you got there.
Sometimes I wonder about the future of medical science. I have already heard one TedTalk speaker say it (Peter Attia - "What if We are Wrong About Diabetes?" https://www.youtube.com/watch?v=UMhLBPPtlrY )- and I know there are others who are starting to believe it, but what if... WHAT IF... the reason I am so overweight is due TO a medical issue, not the other way around? What if it doesn't have anything to do with my willpower or the fact that I don't exercise enough? What if, in fact, diabetes is part of this same underlying medical issue? What if no amount of willpower or dieting would change the basic underlying make-up of my chemistry and even if I lost weight, the other issues would still happen to me?
I know one result of this thought process... the shame at being overweight would be gone. The self-hate would be gone too, and so someone in my condition would actually care enough to tackle being as healthy as possible, instead of giving up because who wants to work that hard to help someone you hate?
I dream that one day this will no longer be an issue. In 150 years I hope that medical science will have come so far that they no longer blame the person for issues that are much, much deeper than something like willpower or being shamed into it fixing it (issues such as addiction, mental health, weight, etc). I hope that they look back at where we are now and think of this the same way we now wonder how the most enlightened 150 years ago believed that bloodletting was the best way to cure illness.
I still need to lose weight. I know I have an addiction to food and it's controlling my life. I know that there are definitely health issues that are directly caused by my obesity. But people, especially those in the medical field, need to realize that weight loss is not the most important aspect of life. After all, true health is the goal - not a number on a scale.
I write this blog from both the perspective as someone who deals with these things personally and as someone who has several loved ones who also deal with these issues. Right now the latter is tearing me up inside.
My daughter has several health issues - mental and physical. As anyone who deals with these issues knows, the mental makes the physical worse and vice versa. In other words, anxiety from an anxiety disorder can cause physical pain. If you already have a condition that causes pain, like fibromyalgia, add anxiety to the mix and it's a lot to deal with.
She is currently in college and was hoping to do something really special next semester - one of her big dreams. However, this semester has been truly horrible for her.
Right before the semester started, she hurt her back badly - so badly we thought for a while that she would need surgery. Instead she "just" needed physical therapy 2x-3x a week by a specialist in this type of injury... and the only one in our area was over 30 minutes each way from our home.
Due to fibromyalgia and dysautonomia that she deals with, mornings are very hard for her in the best of circumstances. Given her extreme back pain on top of it and having to take time for physical therapy and... let's just say that she started off already behind in her classes this year, missing many classes and being in so much pain she couldn't concentrate on schoolwork.
As soon as she started getting behind, the stress started mounting. The added pressure of getting ready for the study abroad experience she has hoped for years she would be able to do added stress, which increased the pain and symptoms of her health issues. Then the pain increased her stress. You can see where this is going...
She has stumbled along, fighting with everything in her, to even barely make it through this semester. Even with all of the work she has done, her grades right now are pitiful. She's an A/B student and it's entirely possible she'll fail, even though she's worked her tail off.
Due to miscommunication, not caring, or just not understanding, her professors this semester have added to the struggle by not following her accommodations that were already set in place. Her medications aren't the right ones, or aren't enough, but she's been struggling so much to deal with school that she hasn't been able to focus on getting those corrected.
I have been stressed and hurting along with her. It's been a real roller-coaster ride - where we thought she would get to go and then something would happen that would put a kink in the works. Then that would work out and we could get excited only to have another kink. I can't tell you how many times this has happened this semester concerning this experience.
So last Friday she finally committed to going no matter what. I got in high gear and finally started on all of the many details that we have been planning but were waiting for a final confirmation before we actually started doing.
Then everything changed.
I don't want to go into detail on how it happened but Friday afternoon she realized that even though she can go, it just might not be the best thing for her to go. Because I know how much she's wanted to go, I know I've pushed her, probably more than I should have. I thought that if she could just make it there, everything would somehow be okay.
With this realization, I felt like my heart was being torn out (because it's all about me, right?) Really, I just hurt so much for her, knowing that this dream could come to an end because of these stupid diseases that we just can't get a handle on. Co-dependent? Of course, I am. I'm a momma. When she hurts, I hurt. Maybe one day I'll get healthy and get boundaries and be able to handle it better when she hurts. But for now - I'm a basket-case.
I have been all weekend. I was already in a low cycle with my bipolar disorder and can't seem to get rid of this stupid cough, which exhausts me on top of my regular always-tired feeling. So I especially haven't been in a place where I could separate myself from her pain this weekend. But feeling her pain isn't helpful because I couldn't take it away... she was hurting too. And I know there's nothing I can do about it.
Sometimes I get so bitter about the fact that my little girl can't just be a regular college kid. She has to put so much energy into just getting through life, she has nothing left for fun. But even with all that, she gets lumped into a group with the college kids who just party and don't care about class... I know that's at least a partial factor on why her professors don't cut her more slack.
Anyway, today we gave up. She hasn't made the final decision, but it looks like she is going to ask for incompletes this semester because trying to get everything done before finals is stressing her out so much that we are seriously worried about her possibly having a complete breakdown. Then most likely she is going to take the next semester off from college completely, to get her health straightened out.
With this plan, the hope is that she will go back to her current college next fall and will be able to attempt again to do the study abroad experience the next spring. This will put her a year behind on graduating from college, but she will still get to fulfill her dream.
I wish so much that I could just fix it - make it all go away. In the meantime, even though I fail more than I succeed, I'm going to keep trying to be supportive of both her health needs and her dreams... and try my best not to let the supporting her dreams get in the way of her health.