When my doctor diagnosed me with Hashimoto’s (an underactive thyroid caused by an autoimmune disease), I felt both relieved and sad – relieved because I finally had an answer to why the weight was gradually piling on, why I had to spend most of my days in bed and why I suffered from skin irritations and bloating; sad because I wished I had known earlier. What makes it worse is that my mother and grandmother had had the disease for years, but only shortly before my diagnosis was my mother told that it can be genetic.
This truly brought it home to me how unaware we are of this disease, particularly when I recently read on one of patient advocate Mary Shomon’s websites that as many as 59 million Americans have thyroid problems, yet the majority remain undiagnosed. Why on earth is this and what can we do to change it?
The more I read and the more I talk to others, the more I realize how much this disease is trivialized and mocked. One friend’s reaction to my diagnosis was “I didn’t think it was that serious”. Well, mate, a disease that will chronically affect your whole body for the rest of your life in ways you can’t even and sometimes don’t even want to imagine is anything but trivial. Incidentally, said friend’s mother suffers from thyroid disease. Another friend was of the opinion that downing a Red Bull energy drink would help me feel less tired – well, I wish it were that simple! Another friend remarked that society deems the stereotypical thyroid patient to be a fat, depressed woman. Sure, we get fat. Sure, we get depressed, but this disease is about so much more. Symptoms range from hair loss to skin issues to tiredness to obesity to blood pressure issues to infertility to dry mucous membranes (including your lady bits!) This is not a pretty disease and not one some people like talking or hearing about, but it’s certainly one that the general public needs to know more about when you consider how very prevalent yet undiagnosed it is.
Moreover, there are still way too many people out there who are suffering despite being on medication. Members of the medical community think that one little pill is a panacea and time and again I talk to patients who were repeatedly misdiagnosed with other illnesses, very often depression, before being given the correct diagnosis. To make matters worse, many doctors rely much too heavily on blood work and less so on how the patient actually feels. It also seems to be a frequent occurrence that thyroid patients who continue to complain of weight gain get sent home and told to “lay off the beer” or “stop using your thyroid disease as an excuse”. When your hormones are out of whack, you can literally lead as healthy a lifestyle as you like, but you may still suffer from weight gain and problems losing weight. That is why we have to be our own advocates – a good doctor can help us get well, but they can’t do it for us.
Explaining thyroid disease (or any disease for that matter) to your friends and family is no mean feat and I’d like to share my experiences with you in the hope that you will feel able to share yours with me. Since my diagnosis, I have done copious amounts of research which I am always happy to share with many family members as links to articles or in my own words (particularly as thyroid disease runs in the family), most of whom are diagnosed, but with unsatisfactory treatment; a few of whom are undiagnosed, but based on their symptoms we suspect that they may suffer from it and I am eager to help them get diagnosed. I try to gauge each person’s interest and receptiveness to the information I am providing them with. After all, I don’t want to shove it down their throats, but I figure if I make it available to them, then it is their decision whether they read it or not. Much to their credit, most members of my family are very happy to discuss the disease with me and listen to what I have researched, realizing that it may benefit them in the long run. It is also important to note that there are tactful ways of suggesting to your family that they get tested without getting too personal about certain symptoms such as weight gain, but who am I telling? Most of us know exactly how it is to be on the receiving end of tactless comments about our weight.
I find it much more of a challenge to explain to friends what is going on with me – why I haven’t been my usual sociable self for months and why I have to concentrate on what is best for me right now and whatever helps me to get well. I hate seeming selfish, but this is the way it is when you are recovering from a chronic illness. Perhaps recovery is the wrong word. It won’t ever go away as it’s chronic, but I am determined to get it under control. I have decided to be very honest about my disease, which does take guts because you have to be prepared for a whole myriad of reactions …
A few people have been very supportive and understanding, offering their help and comfort. Those who have been the most supportive tend to be those who are familiar with medicine or illness because they are the ones who have often experienced it first-hand and know where I am coming from. I have realized over the past few years that not everybody is capable of empathy and I can’t expect everybody to empathize with me or I’ll just end up disappointed. I tend to find it less stressful to spend the majority of my time with those who understand and care about what I am going through. With chronic illness, it’s vital to avoid stressful situations and if I feel that certain friends are more stressful than supportive, I will consider seeing less of them for my own good.
Other people are what one might dub life’s ostriches. They prefer to stick their heads in the sand and have reacted negatively to my involvement and research in this disease. One friend warned me not to become too involved as the “disease would then become my life” and she even referred to campaigners who talk about nothing but what they are campaigning for. But I see it differently. I refuse to be ashamed of my disease. This is part of who I am and if I can raise awareness and learn more about it, this will help me and others to control it and stop it from consuming us. I am trying to turn something negative into something positive. And positive really is the magic word here. I think we have to make a concerted effort to be positive when talking to others about our disease if we want to get our message across. Of course, we can bitch to those we truly feel comfortable with, but when talking to friends they will often be more receptive if our message is perceived as informative rather than whiny.
On the other hand, there are those who would prefer to rather not know and I know that we have to respect this. As I said above, you can’t force-feed anyone information. Some people view Internet research with skepticism. It scares the shit out of them. Others have a disease and would rather not dwell on the symptoms for fear that focusing on them will make them become real. Others still have a fear of doctors and others have referred to my research as a “dangerous half-knowledge” (a translation from the German). The question I pose to you all in parting is this: is it more dangerous to know something or to know nothing at all?
Hi Sarah! You are actually a neighbor so to speak. I live fairly close. (Not sure if this is private.)
It’s great that you have a blog for folks suffering from thyroid issues. I’ve been hypothyroid for 20 years. I have also had thyroid cancer.
I wish this was available years ago. There was very little information back then and what I did read, scared the shit out of me as you stated! It is an on going battle. Some good times and some very bad. The key is finding a doctor that listens to you! I have finally found one after all these years. She is the BEST! Depending on where you are in Bucks County she would be less than an hours drive. If you are interested, let me know!
I’m sorry to hear about your thyroid cancer, but very glad you have found a doctor who works for you..
How cool! Once I approve the comments on my blog, they are public, but if you could email me (see here: http://sarahjdowning.com/imprint/) I would be very interested in hearing about this doctor of yours and where she is. We are based in New Hope. I did just make an appointment to see a new doctor, but it’s always good to have several names just in case. Does your doctor take insurance?
We have been seeing one in Conshohocken who knows his stuff, but I find him too passive and his office is too chaotic as they rarely get back to us when they say they will. My other problem is that we drive just over an hour to get to him, which I only really want to do if I feel that it’s worth it.