The one chronic illness diagnosis I seem to talk about the least is glaucoma, yet this is the first one I was diagnosed with. I remember getting the diagnosis and being quite upset. Why? Because I was only 29 at the time. Both of my parents have glaucoma, and it runs on both sides of my family. My siblings and I have literally been tested for it yearly with our annual eye checkups since we were children (I am also the only one of my siblings that currently has glaucoma). Usually when I do mention that I have glaucoma a number of misconceptions come up for people. So, with some research, I thought maybe I could address those now.
But first, what is glaucoma? Glaucoma is a degenerative eye disease that causes damage to the optic nerve, which is required for good vision. Usually this is due to high eye pressure.
Now on to 5 myths & misconceptions about gluacoma!
Glaucoma is only found in old people – so people are usually quite surprised when I tell them that I have glaucoma, and how young I was when I was diagnosed. The truth is that even babies can get glaucoma, and it can occur at any age (thus why I was tested since I was young). It does commonly run in families (often hereditary, but not always), and nearsightedness increases the risk of glaucoma (my current ophthalmologist told me I’m “extremely nearsighted” – this is true lol).
If you have perfect vision, you can’t get glaucoma – not relevant to me, since I’ve wrn glasses since I was 8, and as I mentioned I am extremely nearsighted. However, upon doing some research for this post, I have learned that it doesn’t matter how your vision is. Glaucoma is known as the “silent thief” because there are no symptoms for early glaucoma. Due to that, it’s important for everyone to at least get a regular eye test (yearly) and definitely talk to your eye doctor about glaucoma.
You will definitely have high eye pressure – I actually haven’t had high eye pressure since I was 29 (after a few treatments it’s been relatively stable). It’s still maybe slightly higher than most people’s but it’s very manageable. Apparently there are 2 types of glaucoma, when you have normal-tension glaucoma, you don’t have elevated eye pressure at all (perhaps another reason it’s called the “silent thief” as one of the main tests for glaucoma is to check eye pressure).
Glaucoma always causes eye pain – I have actually never had eye pain from my glaucoma. To my knowledge neither have my parents (whose glaucoma is much more advanced than mine) – though I could be wrong so don’t quote me. While glaucoma can cause eye pain, symptoms do often vary from person to person so it’s not a guarantee.
You will become blind – So my paternal grandmother did actually become blind from glaucoma (by the time she was in her late 80s – though she had poor eyesight for longer). Treatments, however, are much much better now. And according to ophthalmology associations, it doesn’t lead to vision loss for most people any more, especially those with “moderate” glaucoma (which I have a feeling I fall into this camp). Proper eye care (regular doctor visits) and treatment is important in preventing the disease from becoming worse.
So while glaucoma is definitely not fun and can have some not-so-great consequences, for most people – when they take care of their eyes – it’s not the worst diagnosis. For the most part I actually forget I have it. I hope this helps to clear up some myths and also, I hope this normalizes glaucoma for any other “young” glaucoma warriors out there! Keep making the most of it everyone!
A few weeks ago I wrote about the myths and misconceptions about UCTD, one of the diagnoses I have. Another diagnosis I have is fibromyalgia. This is because some of the pain I’ve experienced is not joint related, and the best explanation that could be given for it is fibro. While there are a ton of misconceptions about UCTD, I think there may be even more about fibro, particularly from the medical/healthcare community, which is unfortunate. So I wanted to see if I can help clear some common ones up.
It isn’t a real illness – also known as “it’s all in your head” or “you’re just depressed” or “you’re just tired.” In actuality it is a real diagnosis as designed by the American College of Rheumatology. Though it can be summed up as chronic, widespread pain, there are actual diagnostic criteria for it. Part of the reason people think it isn’t real is that the cause of Fibro is mostly unknown, though there have been some fascinating studies recently about possible markers found, and there are many theories (such as those by Dr. Gabor Mate) that suggest that it is at least partially trauma-related (think biopsychosocial approach – biological causes, psychological causes, sociological causes to illness). While there are many associations between fibromyalgia and depression (fibro can lead to depression, depression can also lead to pain/fibro), there is nothing to suggest that pain isn’t real or that it’s depression or general tiredness. (It also doesn’t lead to depression in everyone, nor does everyone that is depressed have fibro).
It’s a catch-all diagnosis – on a related note, many people just assume that if a symptoms can’t be explained, then it has to be fibro. While I mentioned some of my own symptoms weren’t explained by UCTD, that doesn’t automatically mean they are from fibro. There are actual diagnostic criteria such as: (1) pain and symptoms over the past week, based on the total number of panful areas out of 19 parts of the body plus level of severity of fatigue, waking unrefreshed, and cognitive problems; (2) symptoms lasting at least three months at a similar level; and (3) no other health problem that would explain the pain and other symptoms. (American College of Rheumatology) More info. Interestingly, my previous rheumatologist told me that about 1/3 of people with SLE, RA, UCTD, etc. also have fibro.
Tender points are needed for diagnosis – on the final related note, this is old news. While the diagnostic criteria does state that there are 19 areas checked, and doctors may look for tenderness, that has been removed from the diagnostic criteria (see the above more info for that too).
It can’t be treated (or just take some medication and you’ll be fine) – also known as “alternative treatments don’t work,” “you can’t do anything about it,” and “you shouldn’t exercise.” Apparently medication for fibro only works some of the time (I’ve read between 20-40%) so while it may be helpful it isn’t the best bet. I was put on Lyrica/pregablin for fibro symptoms, and I would say it helped some. You know what helped more? All of the alternative treatments and exercise I did – massage therapy, naturopathic medicine, chiropractic adjustments, physiotherapy. In fact I managed to get off of Lyrica because of exercise. I’m not the only one either. There are tons of reports of these things being helpful. And please note, I’m saying helpful, not a cure.
Hopefully this helps you feel better about your diagnosis, and/or this is something you can show friends and family who maybe have trouble understanding what you’re going through. And most importantly, keep making the most of it!
One of my diagnoses is undifferentiated connective tissue disease (UCTD) and while according to my new rheumatologist my disease seems to be more-or-less in remissions (still some mild symptoms) I wanted to talk about some misconceptions about UCTD that many people – patients, doctors, family members, allied healthcare professionals, etc. have about it.
It’s a diagnosis given when they don’t know what’s wrong with you. Not exactly, technically UCTD is its own diagnosis. It is given when someone has some symptoms of a specified connective tissue disease (like lupus/SLE or rheumatoid arthritis/RA) but doesn’t not have enough symptoms to warrant those diagnoses. Some of the confusion here might be the word “undifferentiated” which is vague at best, but isn’t meant to be that vague. There is also no diagnostic criteria for UCTD, meaning that differential diagnosis is used (the doctor doesn’t have a better explanation and uses a judgment call)
It’s the same as MCTD. Mixed Connective Tissue Disease is different in that in MCTD there are symptoms of several different connective tissue diseases present. This doesn’t occur in UCTD, where there are some symptoms of a specific connective tissue disease present.
The symptoms aren’t that bad. It depends on the course of the disease of course. The most common symptoms are joint pain and a positive ANA. Other common symptoms include arthritis, Raynaud’s phenomenon, rashes, alopecia, oral ulcers, etc. Again, not enough would be present to give an SLE or RA diagnosis for example. Most of these symptoms are not that fun. The good thing is that there is usually no organ involvement – the kidney, liver, lungs and brain are usually fine.
It will turn into a connective tissue disease like SLE or RA. Actually, probably not. Only about a third of people with UCTD end up with a specified connective tissue disease.
It will drastically affect quality of life. Controversial, but part of this is up to you. Here’s what I mean. So as in #4, only about one third of people end up with SLE/RA/etc. What about the other two thirds? Well, about one third remain with relatively mild UCTD. The last third end up in remission. The medications used are much milder than immunosuppressants (which is good!) and lifestyle changes can really affect the course of the illness moving forward. UCTD does not mean we should give up!
I hope this helps clear a few things up! I would love to hear what my fellow UCTD warriors think and if anyone has run into any other misconceptions about it!